references.bib

% My references
@book{bernard_research_2017,
  title = {Research {Methods} in {Anthropology}: {Qualitative} and {Quantitative} {Approaches}},
  isbn = {978-1-4422-6886-9},
  shorttitle = {Research {Methods} in {Anthropology}},
  abstract = {Research Methods in Anthropology is the standard textbook for methods classes in anthropology. Written in Russ Bernard’s unmistakable conversational style, this guide has launched tens of thousands of students into the fieldwork enterprise with a combination of rigorous methodology, wry humor, and commonsense advice. Whether you are coming from a scientific, interpretive, or applied anthropological tradition, you will learn field methods from the best guide in both qualitative and quantitative methods.},
  language = {en},
  publisher = {Rowman \& Littlefield},
  author = {Bernard, H. Russell},
  month = nov,
  year = {2017},
  note = {Google-Books-ID: 2Fk7DwAAQBAJ},
  keywords = {Social Science / Anthropology / General, Social Science / Methodology, Social Science / Research},
}


@book{bernard_social_2000,
  title = {Social {Research} {Methods}: {Qualitative} and {Quantitative} {Approaches}},
  isbn = {978-0-7619-1403-7},
  shorttitle = {Social {Research} {Methods}},
  abstract = {At last, a social research methods text for students and future researchers who will need to use both words and numbers in their research. Using actual examples from psychology, sociology, anthropology, health, and education, the book provides readers with both a conceptual understanding of each technique as well as showing them how to use the technique. H. Russell Bernard, author of the best-selling textbook Research Methods in Anthropology and a world figure in the social sciences, brings to the researcher and the student the excitement of the research act as never before.},
  language = {en},
  publisher = {SAGE},
  author = {Bernard, Harvey Russell},
  year = {2000},
  note = {Google-Books-ID: VDPftmVO5lYC},
  keywords = {Social Science / Research},
}

@article{gustarini_anonymous_2016,
  title = {Anonymous smartphone data collection: factors influencing the users’ acceptance in mobile crowd sensing},
  volume = {20},
  issn = {1617-4917},
  shorttitle = {Anonymous smartphone data collection},
  url = {https://doi.org/10.1007/s00779-015-0898-0},
  doi = {10.1007/s00779-015-0898-0},
  abstract = {Mobile crowd sensing (MCS) assumes a collaborative effort from mobile smartphone users to sense and share their data needed to fulfill a given MCS objective (e.g., modeling of urban traffic or wellness index of a community). In this paper, we investigate the user’s perception of anonymity in MCS and factors influencing it. We conducted a 4-week extensive smartphone user study to fulfill three main objectives. (1) Understand if users prefer to share data anonymously or not anonymously. (2) Investigate the possible factors influencing the difference between these two modalities, considering: (a) users’ sharing attitude, (b) shared data kind and (c) users’ intimacy when data are shared (we defined intimacy as the users’ perception of their context with respect to place, number and kind of people around them). (3) Identify further users’ personal factors influencing their perception of anonymity via multiple interviews along the user study. In the results, we show that data are shared significantly more when anonymously collected. We found that the shared data kind is the factor significantly contributing to this difference. Additionally, users have a common way to perceive anonymity and its effectiveness. To ensure the success of anonymization algorithms in the context of MCS systems, we highlight which issues the researchers developing these algorithms should carefully consider. Finally, we argue about new research paths to better investigate the user perception of anonymity and develop anonymous MCS systems that users are more likely to trust based on our findings.},
  language = {en},
  number = {1},
  urldate = {2020-02-22},
  journal = {Personal and Ubiquitous Computing},
  author = {Gustarini, Mattia and Wac, Katarzyna and Dey, Anind K.},
  month = feb,
  year = {2016},
  pages = {65--82}
}

@article{fogues_sosharp:_2017,
  title = {{SoSharP}: {Recommending} {Sharing} {Policies} in {Multiuser} {Privacy} {Scenarios}},
  volume = {21},
  issn = {1089-7801, 1941-0131},
  shorttitle = {{SoSharP}},
  doi = {10.1109/MIC.2017.4180836},
  abstract = {Users often share information about others; sometimes this inadvertently violates others' privacy. Thus, here the authors propose SoSharP, an agent-based approach to help users maintain their own and others' privacy by guiding a selection of sharing policies in multiuser scenarios. SoSharP learns incrementally and asks for users' input only when required, reducing users' effort.},
  number = {6},
  journal = {IEEE Internet Computing},
  author = {Fogues, Ricard L. and Murukannaiah, Pradeep K. and Such, Jose M. and Singh, Munindar P.},
  month = nov,
  year = {2017},
  keywords = {Computational modeling, Social network services, multi-agent systems, recommender systems, social media, learning (artificial intelligence), crowdsourcing, privacy, Crowdsourcing, Privacy, Internet/Web technologies, data privacy, recommender system, Sensitivity, multiuser, agent-based approach, multiuser privacy scenarios, sharing policies recommendation, SoSharP, Training},
  pages = {28--36}
}


@article{miller_magical_1956,
  title = {The magical number seven, plus or minus two: {Some} limits on our capacity for processing information},
  volume = {63},
  issn = {1939-1471(Electronic),0033-295X(Print)},
  shorttitle = {The magical number seven, plus or minus two},
  doi = {10.1037/h0043158},
  abstract = {A variety of researches are examined from the standpoint of information theory. It is shown that the unaided observer is severely limited in terms of the amount of information he can receive, process, and remember. However, it is shown that by the use of various techniques, e.g., use of several stimulus dimensions, recoding, and various mnemonic devices, this informational bottleneck can be broken. 20 references. (PsycInfo Database Record (c) 2021 APA, all rights reserved)},
  number = {2},
  journal = {Psychological Review},
  author = {Miller, George A.},
  year = {1956},
  note = {Place: US
Publisher: American Psychological Association},
  keywords = {Cognitive Processes, Information Theory},
  pages = {81--97}
}
@article{glasgow_diabetes_1999,
  title = {In diabetes care, moving from compliance to adherence is not enough},
  volume = {22},
  copyright = {Copyright American Diabetes Association Dec 1999},
  issn = {01495992},
  url = {https://www.proquest.com/docview/223033003/citation/86470315C4A24E2BPQ/1},
  language = {English},
  number = {12},
  urldate = {2021-08-09},
  journal = {Diabetes Care},
  author = {Glasgow, Russell E. and Anderson, Robert M.},
  month = dec,
  year = {1999},
  note = {Num Pages: 3
Place: Alexandria, United States
Publisher: American Diabetes Association},
  keywords = {Medical Sciences--Endocrinology},
  pages = {2090--2}
}
@article{piras_beyond_2019,
  title = {Beyond self-tracking: {Exploring} and unpacking four emerging labels of patient data work},
  volume = {25},
  issn = {1460-4582},
  shorttitle = {Beyond self-tracking},
  url = {https://doi.org/10.1177/1460458219833121},
  doi = {10.1177/1460458219833121},
  abstract = {Despite the growing attention of researchers, healthcare managers and policy makers, data gathering and information management practices are largely untheorized areas. In this work are presented and discussed some early-stage conceptualizations: patient-generated health data, observations of daily living, quantified self and personal health information management. As I shall try to demonstrate, these labels are not neutral; rather, they underpin quite different perspectives with respect to health, patient–doctor relationship and the status of data.},
  language = {en},
  number = {3},
  urldate = {2021-05-04},
  journal = {Health Informatics Journal},
  author = {Piras, Enrico Maria},
  month = sep,
  year = {2019},
  note = {Publisher: SAGE Publications Ltd},
  keywords = {quantified-self, self-tracking, observations of daily living, patient-generated health data, data-work, personal health information management},
  pages = {598--607}
}

@inproceedings{schroeder_examining_2018,
  address = {Hong Kong, China},
  series = {{DIS} '18},
  title = {Examining {Self}-{Tracking} by {People} with {Migraine}: {Goals}, {Needs}, and {Opportunities} in a {Chronic} {Health} {Condition}},
  isbn = {978-1-4503-5198-0},
  shorttitle = {Examining {Self}-{Tracking} by {People} with {Migraine}},
  url = {https://doi.org/10.1145/3196709.3196738},
  doi = {10.1145/3196709.3196738},
  abstract = {Self-tracked health data can help people and their health providers understand and manage chronic conditions. This paper examines personal informatics practices and challenges in migraine, a condition characterized by unpredictable, intermittent, and poorly-understood symptoms. To investigate how people with migraine track and use data related to their condition, we surveyed 279 people with migraine and conducted semi-structured interviews with 13 survey respondents and 6 health providers. We find four distinct goals people bring to tracking and data: 1) answering questions about migraines, 2) predicting and preventing migraines, 3) monitoring and managing migraines over time, and 4) enabling motivation and social recognition. Each goal suggests different needs for the design of tools to support migraine tracking. We also find needs resulting from an individual's goals evolving over time, their varied personal experiences, and their communication and collaboration with providers. We discuss these goals and needs in terms of opportunities for personal informatics tools to facilitate learning to: 1) avoid common pitfalls; 2) support customization and flexibility; 3) account for burden, negativity, and lapsing; and 4) support management with uncertainty.},
  urldate = {2020-06-20},
  booktitle = {Proceedings of the 2018 {Designing} {Interactive} {Systems} {Conference}},
  publisher = {Association for Computing Machinery},
  author = {Schroeder, Jessica and Chung, Chia-Fang and Epstein, Daniel A. and Karkar, Ravi and Parsons, Adele and Murinova, Natalia and Fogarty, James and Munson, Sean A.},
  month = jun,
  year = {2018},
  keywords = {migraine, personal informatics, health, chronic condition},
  pages = {135--148}
}

@inproceedings{bowyer_understanding_2018,
  address = {New York, NY, USA},
  series = {{CHI} '18},
  title = {Understanding the {Family} {Perspective} on the {Storage}, {Sharing} and {Handling} of {Family} {Civic} {Data}},
  isbn = {978-1-4503-5620-6},
  url = {http://doi.acm.org/10.1145/3173574.3173710},
  doi = {10.1145/3173574.3173710},
  abstract = {Across social care, healthcare and public policy, enabled by the "big data" revolution (which has normalized large-scale data-based decision-making), there are moves to "join up" citizen databases to provide care workers with holistic views of families they support. In this context, questions of personal data privacy, security, access, control and (dis-)empowerment are critical considerations for system designers and policy makers alike. To explore the family perspective on this landscape of what we call Family Civic Data, we carried out ethnographic interviews with four North-East families. Our design-game-based interviews were effective for engaging both adults and children to talk about the impact of this dry, technical topic on their lives. Our findings, delivered in the form of design guidelines, show support for dynamic consent: families would feel most empowered if involved in an ongoing co-operative relationship with state welfare and civic authorities through shared interaction with their data.},
  urldate = {2018-05-05},
  booktitle = {Proceedings of the 2018 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
  publisher = {ACM},
  author = {Bowyer, Alex and Montague, Kyle and Wheater, Stuart and McGovern, Ruth and Lingam, Raghu and Balaam, Madeline},
  year = {2018},
  keywords = {big data, boundary objects, healthcare, personal data, ubicomp, user-centered design, data sharing, family, data privacy, civic data, data security, design games, dynamic consent, ethnographic interviews, family design games, family research, social care},
  pages = {136:1--136:13}
}

@inproceedings{bowser_accounting_2017,
  address = {Portland, Oregon, USA},
  series = {{CSCW} '17},
  title = {Accounting for {Privacy} in {Citizen} {Science}: {Ethical} {Research} in a {Context} of {Openness}},
  isbn = {978-1-4503-4335-0},
  shorttitle = {Accounting for {Privacy} in {Citizen} {Science}},
  url = {https://doi.org/10.1145/2998181.2998305},
  doi = {10.1145/2998181.2998305},
  abstract = {In citizen science, volunteers collect and share data with researchers, other volunteers, and the public at large. Data shared in citizen science includes information on volunteer location or other sensitive personal information; yet, volunteers do not typically express privacy concerns. This study uses the framework of contextual integrity to understand privacy accounting in the context of citizen science, by analyzing contextual variables including roles; information types; data flows and transmission principles; and, uses, norms, and values. Findings show that uses, norms, and values-including core values shared by researchers and public volunteers, and the motivations of individual volunteers' have a significant impact on privacy accounting. Overall, citizen science volunteers and practitioners share and promote openness and data sharing over protecting privacy. Studying the context of citizen science offers an example of contextually-appropriate data sharing that can inform broader questions about research ethics in an age of pervasive data. Based on these findings, this paper offers implications for designing data and information flows and supporting technologies in public and voluntary data sharing projects.},
  urldate = {2020-06-19},
  booktitle = {Proceedings of the 2017 {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} and {Social} {Computing}},
  publisher = {Association for Computing Machinery},
  author = {Bowser, Anne and Shilton, Katie and Preece, Jenny and Warrick, Elizabeth},
  month = feb,
  year = {2017},
  keywords = {citizen science, digital volunteers, crowdsourcing, privacy, open data, contextual integrity, research ethics},
  pages = {2124--2136}
}

@inproceedings{borders_cpol_2005,
  address = {New York, NY, USA},
  series = {{CCS} '05},
  title = {{CPOL}: high-performance policy evaluation},
  isbn = {978-1-59593-226-6},
  shorttitle = {{CPOL}},
  url = {https://doi.org/10.1145/1102120.1102142},
  doi = {10.1145/1102120.1102142},
  abstract = {Policy enforcement is an integral part of many applications. Policies are often used to control access to sensitive information. Current policy specification languages give users fine-grained control over when and how information can be accessed, and are flexible enough to be used in a variety of applications. Evaluation of these policies, however, is not optimized for performance. Emerging applications, such as real-time enforcement of privacy policies in a sensor network or location-aware computing environment, require high throughput. Our experiments indicate that current policy enforcement solutions are unable to deliver the level of performance needed for such systems, and limit their overall scalability. To deal with the need for high-throughput evaluation, we propose CPOL, a flexible C++ framework for policy evaluation. CPOL is designed to evaluate policies as efficiently as possible, and still maintain a level of expressiveness comparable to current policy languages. CPOL achieves its performance goals by efficiently evaluating policies and caching query results (while still preserving correctness). To evaluate CPOL, we ran a simulated workload of users making privacy queries in a location-sensing infrastructure. CPOL was able to handle policy evaluation requests two to six orders of magnitude faster than a MySql implementation and an existing policy evaluation system. We present the design and implementation of CPOL, a high-performance policy evaluation engine, along with our testing methodology and experimental results.},
  urldate = {2021-08-09},
  booktitle = {Proceedings of the 12th {ACM} conference on {Computer} and communications security},
  publisher = {Association for Computing Machinery},
  author = {Borders, Kevin and Zhao, Xin and Prakash, Atul},
  month = nov,
  year = {2005},
  keywords = {performance, policy evaluation, privacy policy},
  pages = {147--157}
}

@inproceedings{fong_relationship-based_2011,
  address = {New York, NY, USA},
  series = {{CODASPY} '11},
  title = {Relationship-based {Access} {Control}: {Protection} {Model} and {Policy} {Language}},
  isbn = {978-1-4503-0466-5},
  shorttitle = {Relationship-based {Access} {Control}},
  url = {http://doi.acm.org/10.1145/1943513.1943539},
  doi = {10.1145/1943513.1943539},
  abstract = {Social Network Systems pioneer a paradigm of access control that is distinct from traditional approaches to access control. Gates coined the term Relationship-Based Access Control (ReBAC) to refer to this paradigm. ReBAC is characterized by the explicit tracking of interpersonal relationships between users, and the expression of access control policies in terms of these relationships. This work explores what it takes to widen the applicability of ReBAC to application domains other than social computing. To this end, we formulate an archetypical ReBAC model to capture the essence of the paradigm, that is, authorization decisions are based on the relationship between the resource owner and the resource accessor in a social network maintained by the protection system. A novelty of the model is that it captures the contextual nature of relationships. We devise a policy language, based on modal logic, for composing access control policies that support delegation of trust. We use a case study in the domain of Electronic Health Records to demonstrate the utility of our model and its policy language. This work provides initial evidence to the feasibility and utility of ReBAC as a general-purpose paradigm of access control.},
  urldate = {2019-02-24},
  booktitle = {Proceedings of the {First} {ACM} {Conference} on {Data} and {Application} {Security} and {Privacy}},
  publisher = {ACM},
  author = {Fong, Philip W.L.},
  year = {2011},
  note = {event-place: San Antonio, TX, USA},
  keywords = {contexts, electronic health records, modal logic, policy language, relationship-based access control, social networks},
  pages = {191--202}
}

@inproceedings{kumaraguru_survey_2007,
  title = {A survey of privacy policy languages},
  booktitle = {Workshop on {Usable} {IT} {Security} {Management} ({USM} 07): {Proceedings} of the 3rd {Symposium} on {Usable} {Privacy} and {Security}, {ACM}},
  author = {Kumaraguru, Ponnurangam and Cranor, Lorrie and Lobo, Jorge and Calo, Seraphin},
  year = {2007},
}

@inproceedings{zhao_privacy_2016,
  address = {Republic and Canton of Geneva, CHE},
  series = {{WWW} '16 {Companion}},
  title = {Privacy {Languages}: {Are} we there yet to enable user controls?},
  isbn = {978-1-4503-4144-8},
  shorttitle = {Privacy {Languages}},
  url = {http://doi.org/10.1145/2872518.2890590},
  doi = {10.1145/2872518.2890590},
  abstract = {Privacy protection is one of the most prominent concerns for web users. Despite numerous efforts, users remain powerless in controlling how their personal information should be used and by whom, and find limited options to actually opt-out of dominating service providers, who often process users information with limited transparency or respect for their privacy preferences. Privacy languages are designed to express the privacy-related preferences of users and the practices of organisations, in order to establish a privacy-preserved data handling protocol. However, in practice there has been limited adoption of these languages, by either users or data controllers. This survey paper attempts to understand the strengths and limitations of existing policy languages, focusing on their capacity of enabling users to express their privacy preferences. Our preliminary results show a lack of focus on normal web users, in both language design and their tooling design. This systematic survey lays the ground work for future privacy protection designs that aim to be centred around web users for empowering their control of data privacy.},
  urldate = {2021-08-09},
  booktitle = {Proceedings of the 25th {International} {Conference} {Companion} on {World} {Wide} {Web}},
  publisher = {International World Wide Web Conferences Steering Committee},
  author = {Zhao, Jun and Binns, Reuben and Van Kleek, Max and Shadbolt, Nigel},
  month = apr,
  year = {2016},
  keywords = {data terms of use, privacy languages, user control},
  pages = {799--806}
}

@article{luca_usable_2016,
  title = {Usable privacy and security},
  volume = {58},
  issn = {2196-7032},
  url = {https://www.degruyter.com/document/doi/10.1515/itit-2016-0034/html},
  doi = {10.1515/itit-2016-0034},
  abstract = {Article Usable privacy and security was published on October 28, 2016 in the journal it - Information Technology (volume 58, issue 5).},
  language = {en},
  number = {5},
  urldate = {2021-08-05},
  journal = {it - Information Technology},
  author = {Luca, Alexander De and Zezschwitz, Emanuel von},
  month = oct,
  year = {2016},
  note = {Publisher: De Gruyter Oldenbourg
Section: it - Information Technology},
  pages = {215--216}
}

@inproceedings{liu_analyzing_2011,
  title={Analyzing facebook privacy settings: user expectations vs. reality},
  author={Liu, Yabing and Gummadi, Krishna P and Krishnamurthy, Balachander and Mislove, Alan},
  booktitle={Proceedings of the 2011 ACM SIGCOMM conference on Internet measurement conference},
  pages={61--70},
  year={2011}
}

@inproceedings{sharma_studying_2015,
  address = {Vancouver, BC, Canada},
  series = {{CSCW} '15},
  title = {Studying and {Modeling} the {Connection} between {People}'s {Preferences} and {Content} {Sharing}},
  isbn = {978-1-4503-2922-4},
  url = {https://doi.org/10.1145/2675133.2675151},
  doi = {10.1145/2675133.2675151},
  abstract = {People regularly share items using online social media. However, people's decisions around sharing---who shares what to whom and why---are not well understood. We present a user study involving 87 pairs of Facebook users to understand how people make their sharing decisions. We find that even when sharing to a specific individual, people's own preference for an item (individuation) dominates over the recipient's preferences (altruism). People's open-ended responses about how they share, however, indicate that they do try to personalize shares based on the recipient. To explain these contrasting results, we propose a novel process model of sharing that takes into account people's preferences and the salience of an item. We also present encouraging results for a sharing prediction model that incorporates both the senders' and the recipients' preferences. These results suggest improvements to both algorithms that support sharing in social media and to information diffusion models.},
  urldate = {2020-06-19},
  booktitle = {Proceedings of the 18th {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} \& {Social} {Computing}},
  publisher = {Association for Computing Machinery},
  author = {Sharma, Amit and Cosley, Dan},
  month = feb,
  year = {2015},
  keywords = {user preferences, information diffusion, directed sharing, sharing process},
  pages = {1246--1257}
}


@inproceedings{olejnik_smarper_2017,
  title = {{SmarPer}: {Context}-{Aware} and {Automatic} {Runtime}-{Permissions} for {Mobile} {Devices}},
  shorttitle = {{SmarPer}},
  doi = {10.1109/SP.2017.25},
  abstract = {Permission systems are the main defense that mobile platforms, such as Android and iOS, offer to users to protect their private data from prying apps. However, due to the tension between usability and control, such systems have several limitations that often force users to overshare sensitive data. We address some of these limitations with SmarPer, an advanced permission mechanism for Android. To address the rigidity of current permission systems and their poor matching of users' privacy preferences, SmarPer relies on contextual information and machine learning methods to predict permission decisions at runtime. Note that the goal of SmarPer is to mimic the users' decisions, not to make privacy-preserving decisions per se. Using our SmarPer implementation, we collected 8,521 runtime permission decisions from 41 participants in real conditions. With this unique data set, we show that using an efficient Bayesian linear regression model results in a mean correct classification rate of 80\% (±3\%). This represents a mean relative reduction of approximately 50\% in the number of incorrect decisions when compared with a user-defined static permission policy, i.e., the model used in current permission systems. SmarPer also focuses on the suboptimal trade-off between privacy and utility, instead of only "allow" or "deny" type of decisions, SmarPer also offers an "obfuscate" option where users can still obtain utility by revealing partial information to apps. We implemented obfuscation techniques in SmarPer for different data types and evaluated them during our data collection campaign. Our results show that 73\% of the participants found obfuscation useful and it accounted for almost a third of the total number of decisions. In short, we are the first to show, using a large dataset of real in situ permission decisions, that it is possible to learn users' unique decision patterns at runtime using contextual information while supporting data obfuscation, this is an important step towards automating the management of permissions in smartphones.},
  booktitle = {2017 {IEEE} {Symposium} on {Security} and {Privacy} ({SP})},
  author = {Olejnik, Katarzyna and Dacosta, Italo and Machado, Joana Soares and Huguenin, Kévin and Khan, Mohammad Emtiyaz and Hubaux, Jean-Pierre},
  month = may,
  year = {2017},
  note = {ISSN: 2375-1207},
  keywords = {Smart phones, privacy preferences, mobile privacy, machine learning, Privacy, Mobile communication, Data models, Runtime, permission systems, Androids, Humanoid robots},
  pages = {1058--1076}
}

@inproceedings{emami-naeini_privacy_2017,
  address = {Santa Clara, CA},
  title = {Privacy {Expectations} and {Preferences} in an {IoT} {World}},
  isbn = {978-1-931971-39-3},
  url = {https://www.usenix.org/conference/soups2017/technical-sessions/presentation/naeini},
  booktitle = {Thirteenth {Symposium} on {Usable} {Privacy} and {Security} ({SOUPS} 2017)},
  publisher = {USENIX Association},
  author = {Emami-Naeini, Pardis and Bhagavatula, Sruti and Habib, Hana and Degeling, Martin and Bauer, Lujo and Cranor, Lorrie Faith and Sadeh, Norman},
  year = {2017},
  pages = {399--412}
}

@inproceedings{lee_privacy_2017,
  title = {Privacy preference modeling and prediction in a simulated campuswide {IoT} environment},
  doi = {10.1109/PERCOM.2017.7917874},
  abstract = {With the advent of the Internet of Things (IoT), users are more likely to have privacy concerns since their personal information could be collected, analyzed, and utilized without notice by the networked IoT devices and services. Users may want to control all such activities by explicitly expressing their privacy preferences. However, it is becoming increasingly difficult for users to do so, not only because of the cognitive burden of continuously making privacy decisions for IoT services, but also because IoT devices have no, or only very restricted, user interfaces. Intelligent software helping users make better privacy decisions will be an important component of privacy-preserving IoT environments. In order to construct such a component, we aim to verify whether it will be possible to computationally model and predict users' privacy preferences in IoT. To that end, we survey 172 participants in a simulated campuswide IoT environment about their privacy preferences regarding hypothetical personal information tracking scenarios. Then, we cluster the scenarios based on the survey responses, arriving at four clusters with distinct associated privacy preferences. Based on the clustering results, we uncover contextual factors that induce privacy violations in IoT. Finally, we build machine learning models to predict users' privacy decisions, using both contextual information and the corresponding cluster membership as training data. The final trained model shows 77\% accuracy in predicting users' decisions whether or not to allow the respective IoT scenario.},
  booktitle = {2017 {IEEE} {International} {Conference} on {Pervasive} {Computing} and {Communications} ({PerCom})},
  author = {Lee, Hosub and Kobsa, Alfred},
  month = mar,
  year = {2017},
  note = {ISSN: 2474-249X},
  keywords = {privacy decision making, user interfaces, learning (artificial intelligence), personal information, decision making, privacy, experience sampling, IoT, data privacy, Internet of Things, K-modes clustering, conditional inference tree, Google Glass, hypothetical personal information tracking scenarios, intelligent software, Internet of Things users, machine learning models, networked IoT devices, networked IoT services, preference modeling, privacy preference modeling, privacy-preserving IoT environments, simulated campuswide IoT environment, user privacy decision prediction, user privacy preference prediction},
  pages = {276--285}
}

@article{apthorpe_discovering_2018,
  title = {Discovering {Smart} {Home} {Internet} of {Things} {Privacy} {Norms} {Using} {Contextual} {Integrity}},
  volume = {2},
  url = {https://doi.org/10.1145/3214262},
  doi = {10.1145/3214262},
  abstract = {The proliferation of Internet of Things (IoT) devices for consumer "smart" homes raises concerns about user privacy. We present a survey method based on the Contextual Integrity (CI) privacy framework that can quickly and efficiently discover privacy norms at scale. We apply the method to discover privacy norms in the smart home context, surveying 1,731 American adults on Amazon Mechanical Turk. For \$2,800 and in less than six hours, we measured the acceptability of 3,840 information flows representing a combinatorial space of smart home devices sending consumer information to first and third-party recipients under various conditions. Our results provide actionable recommendations for IoT device manufacturers, including design best practices and instructions for adopting our method for further research.},
  number = {2},
  urldate = {2020-01-26},
  journal = {Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies},
  author = {Apthorpe, Noah and Shvartzshnaider, Yan and Mathur, Arunesh and Reisman, Dillon and Feamster, Nick},
  month = jul,
  year = {2018},
  keywords = {Privacy, Internet of Things, Contextual Integrity},
  pages = {59:1--59:23}
}

@article{he_data-driven_2019,
  title = {A {Data}-{Driven} {Approach} to {Designing} for {Privacy} in {Household} {IoT}},
  volume = {10},
  issn = {2160-6455},
  url = {https://doi.org/10.1145/3241378},
  doi = {10.1145/3241378},
  abstract = {In this article, we extend and improve upon a previously developed data-driven approach to design privacy-setting interfaces for users of household IoT devices. The essence of this approach is to gather users’ feedback on household IoT scenarios before developing the interface, which allows us to create a navigational structure that preemptively maximizes users’ efficiency in expressing their privacy preferences, and develop a series of ‘privacy profiles’ that allow users to express a complex set of privacy preferences with the single click of a button. We expand upon the existing approach by proposing a more sophisticated translation of statistical results into interface design, and by extensively discussing and analyzing the tradeoff between user-model parsimony and accuracy in developing privacy profiles and default settings.},
  number = {1},
  urldate = {2020-02-21},
  journal = {ACM Transactions on Interactive Intelligent Systems (TiiS)},
  author = {He, Yangyang and Bahirat, Paritosh and Knijnenburg, Bart P. and Menon, Abhilash},
  month = sep,
  year = {2019},
  keywords = {privacy, Designing for IoT},
  pages = {10:1--10:47}
}

@article{barbosa_what_2019,
  title = {“{What} if?” {Predicting} {Individual} {Users}’ {Smart} {Home} {Privacy} {Preferences} and {Their} {Changes}},
  volume = {2019},
  shorttitle = {“{What} if?},
  url = {https://content.sciendo.com/configurable/contentpage/journals$002fpopets$002f2019$002f4$002farticle-p211.xml},
  doi = {10.2478/popets-2019-0066},
  language = {en},
  number = {4},
  urldate = {2020-01-25},
  journal = {Proceedings on Privacy Enhancing Technologies},
  author = {Barbosa, Natã M. and Park, Joon S. and Yao, Yaxing and Wang, Yang},
  month = oct,
  year = {2019},
  pages = {211--231}
}

@inproceedings{li_towards_2020,
  address = {New York, NY, USA},
  series = {{CHI} '20},
  title = {Towards {A} {Taxonomy} of {Content} {Sensitivity} and {Sharing} {Preferences} for {Photos}},
  isbn = {978-1-4503-6708-0},
  url = {https://doi.org/10.1145/3313831.3376498},
  doi = {10.1145/3313831.3376498},
  abstract = {Determining which photos are sensitive is difficult. Although emerging computer vision systems can label content items, previous attempts to distinguish private or sensitive content fall short. There is no human-centered taxonomy that describes what content is sensitive or how sharing preferences for content differs across recipients. To fill this gap, we introduce a new sensitive content elicitation method which surmounts limitations of previous approaches, and, using this new method, collected sensitive content from 116 participants. We also recorded participants' sharing preferences with 20 recipient groups. Next, we conducted a card sort to surface user-defined categories of sensitive content. Using data from these studies, we generated a taxonomy that identifies 28 categories of sensitive content. We also establish how sharing preferences for content differs across groups of recipients. This taxonomy can serve as a framework for understanding photo privacy, which can, in turn, inform new photo privacy protection mechanisms.},
  urldate = {2021-05-13},
  booktitle = {Proceedings of the 2020 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
  publisher = {Association for Computing Machinery},
  author = {Li, Yifang and Vishwamitra, Nishant and Hu, Hongxin and Caine, Kelly},
  month = apr,
  year = {2020},
  keywords = {privacy, security, photo privacy, sensitive content},
  pages = {1--14}
}

@inproceedings{loukil_liopy_2018,
  title = {{LIoPY}: {A} {Legal} {Compliant} {Ontology} to {Preserve} {Privacy} for the {Internet} of {Things}},
  volume = {02},
  shorttitle = {{LIoPY}},
  doi = {10.1109/COMPSAC.2018.10322},
  abstract = {The Internet of Things (IoT) provides the opportunity to collect, process and analyze data. This opportunity helps to understand preferences and life patterns of individuals in order to offer them customized services. However, privacy has become a significant issue due to the personal nature of the knowledge derived from these data and the involved potential risks. Despite the increasing legislation pressure, few proposed solutions have dealt with the privacy requirements, such as consent and choice, purpose specification, and collection limitation. In this paper, we propose a privacy ontology in order to incorporate privacy legislation into privacy policies while considering several privacy requirements. Our proposed ontology aims both at making the smart devices more autonomous and able to infer data access rights and enforcing the privacy policy compliance at the execution level. We implemented and evaluated our privacy ontology based on a healthcare scenario.},
  booktitle = {2018 {IEEE} 42nd {Annual} {Computer} {Software} and {Applications} {Conference} ({COMPSAC})},
  author = {Loukil, Faiza and Ghedira-Guegan, Chirine and Boukadi, Khouloud and Benharkat, Aicha Nabila},
  month = jul,
  year = {2018},
  note = {ISSN: 0730-3157},
  keywords = {Data privacy, Internet of Things (IoT), IoT data lifecycle, Law, Ontologies, Privacy, privacy ontology, Smart devices, Standards},
  pages = {701--706}
}


@inproceedings{arruda_toward_2019,
  address = {New York, NY, USA},
  series = {{SAC} '19},
  title = {Toward a lightweight ontology for privacy protection in {IoT}},
  isbn = {978-1-4503-5933-7},
  url = {https://doi.org/10.1145/3297280.3297367},
  doi = {10.1145/3297280.3297367},
  abstract = {The literature asserts that the design of an ontology-based privacy model is an essential starting point to address privacy risks in IoT, where connected devices are increasingly capable of monitoring human activities. Due to the omnipresence of data privacy concerns in IoT, we highlight the need for privacy ontologies that combine an expressive vocabulary with extension points but that do not overload the processing of privacy policies data. This paper presents IoT-Priv as a lightweight privacy layer upon IoT basic concepts such as device, sensor, and service. We introduce privacy requirements guiding the IoT-Priv ontology design, match these requirements to the respective privacy terms modeled, and show how to use IoT-Priv through a usage scenario. Finally, we evaluate static metrics and response times of spatial and temporal query filters over instances of privacy policies. Results open the way for the creation of scalable, privacy-enabled systems.},
  urldate = {2021-05-21},
  booktitle = {Proceedings of the 34th {ACM}/{SIGAPP} {Symposium} on {Applied} {Computing}},
  publisher = {Association for Computing Machinery},
  author = {Arruda, Mayke Ferreira and Bulcão-Neto, Renato Freitas},
  month = apr,
  year = {2019},
  keywords = {evaluation, internet of things, ontology, privacy, requirements},
  pages = {880--888}
}


@inproceedings{kanaan_ontological_2017,
  title = {An {Ontological} {Model} for {Privacy} in {Emerging} {Decentralized} {Healthcare} {Systems}},
  doi = {10.1109/ISADS.2017.37},
  abstract = {Emerging healthcare systems are expected to leverage new Internet of Things (IoT) trends to enable preventive and personalized medicine. However, the success of such systems is entirely dependent on the ability to preserve patient privacy. This paper proposes a decentralized ontology based system architecture that caters to a healthcare organization's privacy needs as well as its enterprise security policy concerns considering futuristic IoT and Electronic Health Records (EHR) trends in healthcare. To identify privacy infringements and organizational policy violations across the institution, our proposed HealthCare Security and Privacy (HCSP) ontology is utilized in conjunction with three agent-level filters: the Exception Creation Agent (ECA), the Policy Mapping Agent (PMA), and the Privacy Assurance Filter (PAF). Preliminary evaluation has shown effectiveness of the HCSP ontology in terms of detection of policy compliance to HIPAA standards.},
  booktitle = {2017 {IEEE} 13th {International} {Symposium} on {Autonomous} {Decentralized} {System} ({ISADS})},
  author = {Kanaan, Hisham and Mahmood, Khalid and Sathyan, Varun},
  month = mar,
  year = {2017},
  keywords = {Data privacy, Healthcare, HIPAA, Internet of Things, Medical services, Ontologies, Ontology, Organizations, Privacy, Security, Standards organizations},
  pages = {107--113}
}


@inproceedings{wang_ontology-based_2016,
  title = {Ontology-{Based} {Resource} {Description} {Model} for {Internet} of {Things}},
  doi = {10.1109/CyberC.2016.29},
  abstract = {Internet of things (IoT) mainly realizes the access of kinds of "things". For the massive heterogeneous devices, how to achieve their unified resource description is an important issue for IoT. Considering the lack of unified description model for devices in IoT, an Ontology-based Resource Description Model (ORDM) is proposed in this paper. The resource in IoT is described from attribute, state, control, historical information and privacy classes. In the application of smart office, the ORDM is implemented and applied in detail. The experiments results show that the proposed model can support the rich access devices and business functions in IoT, and has significant application value and prospect.},
  booktitle = {2016 {International} {Conference} on {Cyber}-{Enabled} {Distributed} {Computing} and {Knowledge} {Discovery} ({CyberC})},
  author = {Wang, Shulong and Hou, Yibin and Gao, Fang and Ma, Songsong},
  month = oct,
  year = {2016},
  keywords = {Internet of Things, ontology, resource description},
  pages = {105--108}
}

@inproceedings{toch_locaccino:_2010,
	address = {New York, NY, USA},
	series = {{UbiComp} '10 {Adjunct}},
	title = {Locaccino: {A} {Privacy}-centric {Location} {Sharing} {Application}},
	isbn = {978-1-4503-0283-8},
	shorttitle = {Locaccino},
	url = {http://doi.acm.org/10.1145/1864431.1864446},
	doi = {10.1145/1864431.1864446},
	abstract = {Locaccino is a location sharing application designed to empower users to effectively control their privacy. It has been piloted by close to 2000 users and has been used by researchers as an experimental platform for conducting research on location-based social networks. Featured technologies include expressive privacy rule creation, detailed feedback mechanisms that help users understand their privacy, algorithms for analyzing privacy preferences, and clients for mobile computers and smartphone devices. In addition, variations of Locaccino are also being piloted as part of research on user-controllable policy learning, learning usable privacy personas and reconciling expressiveness and user burden. The purpose of this demo is to introduce participants to the features of Locaccino, so that they can try out the Locaccino smartphone and laptop applications on their own devices, locate their friends and colleagues, and set rich privacy policies for sharing their location.},
	urldate = {2018-06-11},
	booktitle = {Proceedings of the 12th {ACM} {International} {Conference} {Adjunct} {Papers} on {Ubiquitous} {Computing} - {Adjunct}},
	publisher = {ACM},
	author = {Toch, Eran and Cranshaw, Justin and Hankes-Drielsma, Paul and Springfield, Jay and Kelley, Patrick Gage and Cranor, Lorrie and Hong, Jason and Sadeh, Norman},
	year = {2010},
	keywords = {location sharing technology, mobile social technology, privacy},
	pages = {381--382}
}

@inproceedings{toch_empirical_2010,
  address = {New York, NY, USA},
  series = {{UbiComp} '10},
  title = {Empirical models of privacy in location sharing},
  isbn = {978-1-60558-843-8},
  url = {https://doi.org/10.1145/1864349.1864364},
  doi = {10.1145/1864349.1864364},
  abstract = {The rapid adoption of location tracking and mobile social networking technologies raises significant privacy challenges. Today our understanding of people's location sharing privacy preferences remains very limited, including how these preferences are impacted by the type of location tracking device or the nature of the locations visited. To address this gap, we deployed Locaccino, a mobile location sharing system, in a four week long field study, where we examined the behavior of study participants (n=28) who shared their location with their acquaintances (n=373.) Our results show that users appear more comfortable sharing their presence at locations visited by a large and diverse set of people. Our study also indicates that people who visit a wider number of places tend to also be the subject of a greater number of requests for their locations. Over time these same people tend to also evolve more sophisticated privacy preferences, reflected by an increase in time- and location-based restrictions. We conclude by discussing the implications our findings.},
  urldate = {2021-08-09},
  booktitle = {Proceedings of the 12th {ACM} international conference on {Ubiquitous} computing},
  publisher = {Association for Computing Machinery},
  author = {Toch, Eran and Cranshaw, Justin and Drielsma, Paul Hankes and Tsai, Janice Y. and Kelley, Patrick Gage and Springfield, James and Cranor, Lorrie and Hong, Jason and Sadeh, Norman},
  month = sep,
  year = {2010},
  keywords = {location sharing technology, mobile social technology, privacy},
  pages = {129--138}
}


@inproceedings{knijnenburg_information_2014,
  title = {Information disclosure profiles for segmentation and recommendation},
  booktitle = {{SOUPS2014} {Workshop} on {Privacy} {Personas} and {Segmentation}},
  author = {Knijnenburg, Bart P},
  year = {2014}
}
@inproceedings{gulotta_digital_2013,
  address = {Paris, France},
  series = {{CHI} '13},
  title = {Digital artifacts as legacy: exploring the lifespan and value of digital data},
  isbn = {978-1-4503-1899-0},
  shorttitle = {Digital artifacts as legacy},
  url = {https://doi.org/10.1145/2470654.2466240},
  doi = {10.1145/2470654.2466240},
  abstract = {Legacy is the meaningful and complex way in which information, values, and possessions are passed on to others. As digital systems and information become meaningfully parts of people's everyday and social relationships, it is essential to develop new insights about how technology intersects with legacy and inheritance practices. We designed three interactive systems to investigate how digital materials might be passed down in the future. We conducted in-home interviews with ten parents using the systems to provoke discussion about how technology might support or complicate their existing practices. Sessions revealed parents desired to treat their digital information in ways not fully supported by technology. Findings are interpreted to describe design considerations for future work in this emerging space.},
  urldate = {2020-06-08},
  booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
  publisher = {Association for Computing Machinery},
  author = {Gulotta, Rebecca and Odom, William and Forlizzi, Jodi and Faste, Haakon},
  month = apr,
  year = {2013},
  keywords = {design, inheritance, interviews, legacy, reflective design, speculative design, technology probes, digital artifacts},
  pages = {1813--1822}
}

@inproceedings{vertesi_data_2016,
  address = {New York, NY, USA},
  series = {{CSCW} '16},
  title = {Data {Narratives}: {Uncovering} {Tensions} in {Personal} {Data} {Management}},
  isbn = {978-1-4503-3592-8},
  shorttitle = {Data {Narratives}},
  url = {http://doi.acm.org/10.1145/2818048.2820017},
  doi = {10.1145/2818048.2820017},
  abstract = {We present an interview study of 34 participants in the US and Korea who described how they manage their personal data, from work files to family photos. Through their 'data narratives' - accounts of their data management practices, including device usage patterns and negotiations with system and brand ecosystems' we explore how individuals negotiate a complex, multi-service, and morally-charged sociotechnical landscape, balancing demands to share and to safeguard their data in appropriate ways against a shifting background of changing technologies, relationships, individuals, and corporations. We describe the guiding framework that people use to make decisions as a 'moral economy' of data management, contributing to our understanding of context-specific system choices.},
  urldate = {2016-03-29},
  booktitle = {Proceedings of the 19th {ACM} {Conference} on {Computer}-{Supported} {Cooperative} {Work} \& {Social} {Computing}},
  publisher = {ACM},
  author = {Vertesi, Janet and Kaye, Jofish and Jarosewski, Samantha N. and Khovanskaya, Vera D. and Song, Jenna},
  year = {2016},
  keywords = {Data management, data narratives., Data sharing, data sharing, privacy, Privacy},
  pages = {478--490}
}

@inproceedings{thayer_i_2012,
  address = {Seattle, Washington, USA},
  series = {{CSCW} '12},
  title = {I love you, let's share calendars: calendar sharing as relationship work},
  isbn = {978-1-4503-1086-4},
  shorttitle = {I love you, let's share calendars},
  url = {https://doi.org/10.1145/2145204.2145317},
  doi = {10.1145/2145204.2145317},
  abstract = {While there has been substantial research into the use of online calendar systems (OCS) within organizations and families with children, no research focuses on adults without children. In our study, we focus on these OCS users' practices of calendar sharing as relationship work, the continually negotiated practice of managing friendships and intimacy. We conducted semi-structured interviews as part of a qualitative user study of Google Calendar users. We report the calendar sharing behaviors and strategies of our participants, who maintain multiple calendars for different purposes and with different users, communicating factual and emotional information through their calendar events. We contribute new knowledge by discussing four strategies derived from our participants' calendar sharing and relationship work activities.},
  urldate = {2020-06-01},
  booktitle = {Proceedings of the {ACM} 2012 conference on {Computer} {Supported} {Cooperative} {Work}},
  publisher = {Association for Computing Machinery},
  author = {Thayer, Alexander and Bietz, Matthew J. and Derthick, Katie and Lee, Charlotte P.},
  month = feb,
  year = {2012},
  keywords = {calendars, groupware, intimacy, relationship work},
  pages = {749--758}
}



@inproceedings{kumar_modern_2015,
  address = {Vancouver, BC, Canada},
  series = {{CSCW} '15},
  title = {The {Modern} {Day} {Baby} {Book}: {Enacting} {Good} {Mothering} and {Stewarding} {Privacy} on {Facebook}},
  isbn = {978-1-4503-2922-4},
  shorttitle = {The {Modern} {Day} {Baby} {Book}},
  url = {https://doi.org/10.1145/2675133.2675149},
  doi = {10.1145/2675133.2675149},
  abstract = {The practice of sharing family photographs is as old as the camera itself. Many mothers now share baby photos online, yet little is known about what kinds of baby photos they share and their motivations for doing so. Drawing on semi-structured interviews with 22 new mothers, we find that they share cute, funny, milestone, and family and friend photos but refrain from sharing crying and naked photos. While some mothers harbor concerns about controlling information, oversharing, and digital footprints, the benefits of receiving validation outweighs their concerns. Sharing baby photos on Facebook helps new mothers enact and receive validation of "good mothering." However, mothers are charged with the responsibility of stewarding their children's privacy and identities online. We introduce the concept of privacy stewardship to describe the responsibility parents take on when deciding what is appropriate to share about their children online and ensuring that family and friends respect and maintain the integrity of those rules. As a result, mothers must exchange benefits of sharing baby photos with risks of creating digital footprints for their child.},
  urldate = {2020-06-08},
  booktitle = {Proceedings of the 18th {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} \& {Social} {Computing}},
  publisher = {Association for Computing Machinery},
  author = {Kumar, Priya and Schoenebeck, Sarita},
  month = feb,
  year = {2015},
  keywords = {photo sharing, social media, motherhood, facebook, babies},
  pages = {1302--1312}
}

@inproceedings{tolmie_this_2016,
  address = {New York, NY, USA},
  series = {{CSCW} '16},
  title = {“{This} {Has} to {Be} the {Cats}”: {Personal} {Data} {Legibility} in {Networked} {Sensing} {Systems}},
  isbn = {978-1-4503-3592-8},
  shorttitle = {“{This} {Has} to {Be} the {Cats}”},
  url = {http://doi.acm.org/10.1145/2818048.2819992},
  doi = {10.1145/2818048.2819992},
  abstract = {Notions like 'Big Data' and the 'Internet of Things' turn upon anticipated harvesting of personal data through ubiquitous computing and networked sensing systems. It is largely presumed that understandings of people’s everyday interactions will be relatively easy to ‘read off’ of such data and that this, in turn, poses a privacy threat. An ethnographic study of how people account for sensed data to third parties uncovers serious challenges to such ideas. The study reveals that the legibility of sensor data turns upon various orders of situated reasoning involved in articulating the data and making it accountable. Articulation work is indispensable to personal data sharing and raises real requirements for networked sensing systems premised on the harvesting of personal data.},
  urldate = {2016-04-03},
  booktitle = {Proceedings of the 19th {ACM} {Conference} on {Computer}-{Supported} {Cooperative} {Work} \& {Social} {Computing}},
  publisher = {ACM},
  author = {Tolmie, Peter and Crabtree, Andy and Rodden, Tom and Colley, James and Luger, Ewa},
  year = {2016},
  keywords = {accountability, articulation work, ethnography, Networked sensing systems, personal data, privacy, Privacy},
  pages = {491--502}
}

@inproceedings{langheinrich_privacy_2001,
  title={Privacy by design—principles of privacy-aware ubiquitous systems},
  author={Langheinrich, Marc},
  booktitle={International conference on Ubiquitous Computing},
  pages={273--291},
  year={2001},
  organization={Springer}
}

@inproceedings{odom_lost_2012,
  address = {Austin, Texas, USA},
  series = {{CHI} '12},
  title = {Lost in translation: understanding the possession of digital things in the cloud},
  isbn = {978-1-4503-1015-4},
  shorttitle = {Lost in translation},
  url = {https://doi.org/10.1145/2207676.2207789},
  doi = {10.1145/2207676.2207789},
  abstract = {People are amassing larger and more diverse collections of digital things. The emergence of Cloud computing has enabled people to move their personal files to online places, and create new digital things through online services. However, little is known about how this shift might shape people's orientations toward their digital things. To investigate, we conducted in depth interviews with 13 people comparing and contrasting how they think about their possessions, moving from physical ones, to locally kept digital materials, to the online world. Findings are interpreted to detail design and research opportunities in this emerging space.},
  urldate = {2020-06-08},
  booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
  publisher = {Association for Computing Machinery},
  author = {Odom, William and Sellen, Abi and Harper, Richard and Thereska, Eno},
  month = may,
  year = {2012},
  keywords = {cloud computing, interactive systems design, materiality, human-centered architectures, possession},
  pages = {781--790}
}

@article{warren_right_1890,
  title = {The {Right} to {Privacy}},
  volume = {4},
  issn = {0017-811X},
  url = {http://www.jstor.org/stable/1321160},
  doi = {10.2307/1321160},
  number = {5},
  journal = {Harvard Law Review},
  author = {Warren, Samuel D. and Brandeis, Louis D.},
  year = {1890},
  pages = {193--220}
}

@book{westin_privacy_1968,
  title = {Privacy and {Freedom}},
  language = {en},
  author = {Westin, Alan F.},
  year = {1968},
  note = {Google-Books-ID: EqGAfBTQreMC}
}

@article{nissenbaum_privacy_2004,
  title = {Privacy as contextual integrity},
  volume = {79},
  journal = {Wash. L. Rev.},
  author = {Nissenbaum, Helen},
  year = {2004},
  note = {Publisher: HeinOnline},
  pages = {119}
}

@article{smullen_best_2020,
  title = {The {Best} of {Both} {Worlds}: {Mitigating} {Trade}-offs {Between} {Accuracy} and {User} {Burden} in {Capturing} {Mobile} {App} {Privacy} {Preferences}},
  volume = {2020},
  shorttitle = {The {Best} of {Both} {Worlds}},
  url = {https://content.sciendo.com/view/journals/popets/2020/1/article-p195.xml},
  doi = {10.2478/popets-2020-0011},
  abstract = {In today’s data-centric economy, data flows are increasingly diverse and complex. This is best exemplified by mobile apps, which are given access to an increasing number of sensitive APIs. Mobile operating systems have attempted to balance the introduction of sensitive APIs with a growing collection of permission settings, which users can grant or deny. The challenge is that the number of settings has become unmanageable. Yet research also shows that existing settings continue to fall short when it comes to accurately capturing people’s privacy preferences. An example is the inability to control mobile app permissions based on the purpose for which an app is requesting access to sensitive data. In short, while users are already overwhelmed, accurately capturing their privacy preferences would require the introduction of an even greater number of settings. A promising approach to mitigating this trade-off lies in using machine learning to generate setting recommendations or bundle some settings. This article is the first of its kind to offer a quantitative assessment of how machine learning can help mitigate this trade-off, focusing on mobile app permissions. Results suggest that it is indeed possible to more accurately capture people’s privacy preferences while also reducing user burden.},
  language = {en},
  number = {1},
  urldate = {2020-11-17},
  journal = {Proceedings on Privacy Enhancing Technologies},
  author = {Smullen, Daniel and Feng, Yuanyuan and Zhang, Shikun Aerin and Sadeh, Norman},
  month = jan,
  year = {2020},
  note = {Publisher: Sciendo
Section: Proceedings on Privacy Enhancing Technologies},
  pages = {195--215}
}

@article{rader_identifying_2015,
  title = {Identifying patterns in informal sources of security information},
  volume = {1},
  issn = {2057-2085},
  url = {https://academic.oup.com/cybersecurity/article/1/1/121/2367023},
  doi = {10.1093/cybsec/tyv008},
  abstract = {Abstract.  Computer users have access to computer security information from many different sources, but few people receive explicit computer security training.},
  language = {en},
  number = {1},
  urldate = {2019-11-22},
  journal = {Journal of Cybersecurity},
  author = {Rader, Emilee and Wash, Rick},
  month = sep,
  year = {2015},
  pages = {121--144}
}

@inproceedings{das_effect_2014,
  address = {Menlo Park, CA},
  title = {The {Effect} of {Social} {Influence} on {Security} {Sensitivity}},
  isbn = {978-1-931971-13-3},
  url = {https://www.usenix.org/conference/soups2014/proceedings/presentation/das},
  booktitle = {10th {Symposium} {On} {Usable} {Privacy} and {Security} ({SOUPS} 2014)},
  publisher = {USENIX Association},
  author = {Das, Sauvik and Kim, Tiffany Hyun-Jin and Dabbish, Laura A. and Hong, Jason I.},
  year = {2014},
  pages = {143--157}
}

@inproceedings{digioia_social_2005,
  address = {New York, NY, USA},
  series = {{SOUPS} '05},
  title = {Social {Navigation} {As} a {Model} for {Usable} {Security}},
  isbn = {978-1-59593-178-8},
  url = {http://doi.acm.org/10.1145/1073001.1073011},
  doi = {10.1145/1073001.1073011},
  abstract = {As interest in usable security spreads, the use of visual approaches in which the functioning of a distributed system is made visually available to end users is an approach that a number of researchers have examined. In this paper, we discuss the use of the social navigation paradigm as a way of organizing visual displays of system action. Drawing on a previous study of security in the Kazaa peer to peer system, we present some examples of the ways in which social navigation can be incorporated in support of usable security.},
  urldate = {2019-11-22},
  booktitle = {Proceedings of the 2005 {Symposium} on {Usable} {Privacy} and {Security}},
  publisher = {ACM},
  author = {DiGioia, Paul and Dourish, Paul},
  year = {2005},
  note = {event-place: Pittsburgh, Pennsylvania, USA},
  keywords = {social navigation, visualization, collaborative interfaces, peer-to-peer filesharing},
  pages = {101--108}
}

@article{chouhan_co-designing_2019,
  title = {Co-designing for {Community} {Oversight}: {Helping} {People} {Make} {Privacy} and {Security} {Decisions} {Together}},
  volume = {3},
  issn = {2573-0142},
  shorttitle = {Co-designing for {Community} {Oversight}},
  url = {http://doi.acm.org/10.1145/3359248},
  doi = {10.1145/3359248},
  abstract = {Collective feedback can support an individual's decision-making process. For instance, individuals often seek the advice of friends, family, and co-workers to help them make privacy decisions. However, current technologies often do not provide mechanisms for this type of collaborative interaction. To address this gap, we propose a novel model of Community Oversight for Privacy and Security ("CO-oPS"), which identifies mechanisms for users to interact with people they trust to help one another make digital privacy and security decisions. We apply our CO-oPS model in the context of mobile applications ("apps"). To interrogate and refine this model, we conducted participatory design sessions with 32 participants in small groups of 2-4 people who know one another, with the goal of designing a mobile app that facilitates collaborative privacy and security decision-making. We describe and reflect on the opportunities and challenges that arise from the unequal motivation and trust in seeking support and giving support within and beyond a community. Through this research, we contribute a novel framework for collaborative digital privacy and security decision-making and provide empirical evidence towards how researchers and designers might translate this framework into design-based features.},
  number = {CSCW},
  urldate = {2019-11-22},
  journal = {Proc. ACM Hum.-Comput. Interact.},
  author = {Chouhan, Chhaya and LaPerriere, Christy M. and Aljallad, Zaina and Kropczynski, Jess and Lipford, Heather and Wisniewski, Pamela J.},
  month = nov,
  year = {2019},
  keywords = {community, mobile privacy, security, collaborative privacy, collective feedback, oversight},
  pages = {146:1--146:31}
}

@inproceedings{zhao_effect_2016,
  address = {New York, NY, USA},
  series = {{IUI} '16},
  title = {The {Effect} of {Privacy} {Concerns} on {Privacy} {Recommenders}},
  isbn = {978-1-4503-4137-0},
  url = {http://doi.acm.org/10.1145/2856767.2856771},
  doi = {10.1145/2856767.2856771},
  abstract = {Location-sharing services such as Facebook and Foursquare/Swarm have become increasingly popular, due to the ease at which users can share their locations, and participate in services, games and other applications that leverage these locations. But it is important for people who use these services to configure appropriate location-privacy preferences so that they can control to whom they want to share their location information. Manually configuring these preferences may be burdensome and confusing, and so location-privacy preference recommenders based on crowdsourcing preferences from other users have been proposed. Whether people will accept the recommended preferences acquired from other users, who they may not know or trust, has not, however, been investigated. In this paper, we present a user experiment (n=99) to explore what factors influence people's acceptance of location-privacy preference recommenders. We find that 44\% of our participants have privacy concerns about such recommenders. These concerns are shown to have a negative effect (p{\textless}0.001) on their acceptance of the recommendations and their satisfaction about their choices. Furthermore, users' acceptance of recommenders varies according to both context and recommendations being made. Our findings are potentially useful to designers of location-sharing services and privacy recommenders.},
  urldate = {2019-11-16},
  booktitle = {Proceedings of the 21st {International} {Conference} on {Intelligent} {User} {Interfaces}},
  publisher = {ACM},
  author = {Zhao, Yuchen and Ye, Juan and Henderson, Tristan},
  year = {2016},
  note = {event-place: Sonoma, California, USA},
  keywords = {location-based services, privacy preferences, recommender systems, location-sharing services, user acceptance},
  pages = {218--227}
}

@book{hidalgo_how_2021,
  title = {How {Humans} {Judge} {Machines}},
  isbn = {978-0-262-36252-8},
  abstract = {How people judge humans and machines differently, in scenarios involving natural disasters, labor displacement, policing, privacy, algorithmic bias, and more.How would you feel about losing your job to a machine? How about a tsunami alert system that fails? Would you react differently to acts of discrimination depending on whether they were carried out by a machine or by a human? What about public surveillance? How Humans Judge Machines compares people's reactions to actions performed by humans and machines. Using data collected in dozens of experiments, this book reveals the biases that permeate human-machine interactions. Are there conditions in which we judge machines unfairly? Is our judgment of machines affected by the moral dimensions of a scenario? Is our judgment of machine correlated with demographic factors such as education or gender? César Hidalgo and colleagues use hard science to take on these pressing technological questions. Using randomized experiments, they create revealing counterfactuals and build statistical models to explain how people judge artificial intelligence and whether they do it fairly. Through original research, How Humans Judge Machines bring us one step closer tounderstanding the ethical consequences of AI.},
  language = {en},
  publisher = {MIT Press},
  author = {Hidalgo, Cesar A. and Orghiain, Diana and Canals, Jordi Albo and Almeida, Filipa De and Martin, Natalia},
  month = feb,
  year = {2021},
  note = {Google-Books-ID: jM\_tDwAAQBAJ},
  keywords = {Computers / Intelligence (AI) \& Semantics, Computers / Social Aspects, Science / Ethics}
}


@online{zoom_video_2020,
    author = {Zoom},
  title = {Video {Conferencing}, {Web} {Conferencing}, {Webinars}, {Screen} {Sharing}},
  url = {https://zoom.us/},
  lastaccessed ={November 12, 2020},
  year = {2020}
}

@online{miro_miro_2020,
    author = {Miro},
  title = {Miro {\textbar} {Free} {Online} {Collaborative} {Whiteboard} {Platform}},
  url = {https://miro.com/},
  lastaccessed ={November 12, 2020},
  year = {2020}
}

@inproceedings{choe_living_2011,
  address = {Beijing, China},
  series = {{UbiComp} '11},
  title = {Living in a glass house: a survey of private moments in the home},
  isbn = {978-1-4503-0630-0},
  shorttitle = {Living in a glass house},
  url = {https://doi.org/10.1145/2030112.2030118},
  doi = {10.1145/2030112.2030118},
  abstract = {As advances in technology accelerate, sensors and recording devices are increasingly being integrated into homes. Although the added benefit of sensing is often clear (e.g., entertainment, security, encouraging sustainable behaviors, etc.), the home is a private and intimate place, with multiple stakeholders who may have competing priorities and tolerances for what is acceptable and useful. In an effort to develop systems that account for the needs and concerns of householders, we conducted an anonymous survey (N = 475) focusing on the activities and habits that people do at home that they would not want to be recorded. In this paper, we discuss those activities and where in the home they are performed, and offer suggestions for the design of UbiComp systems that rely on sensing and recording.},
  urldate = {2020-01-24},
  booktitle = {Proceedings of the 13th international conference on {Ubiquitous} computing},
  publisher = {Association for Computing Machinery},
  author = {Choe, Eun Kyoung and Consolvo, Sunny and Jung, Jaeyeon and Harrison, Beverly and Kientz, Julie A.},
  month = sep,
  year = {2011},
  keywords = {capture and access, home, mechanical turk, sensing, survey, questionnaire, sensors, privacy, self-report, postcard},
  pages = {41--44}
}


@article{belanger_pocket:_2013,
  title = {{POCKET}: {A} tool for protecting children's privacy online},
  volume = {54},
  issn = {0167-9236},
  shorttitle = {{POCKET}},
  url = {http://www.sciencedirect.com/science/article/pii/S0167923612003429},
  doi = {10.1016/j.dss.2012.11.010},
  abstract = {Children's privacy in the online environment has become critical. Use of the Internet is increasing for commercial purposes, in requests for information, and in the number of children who use the Internet for casual web surfing, chatting, games, schoolwork, e-mail, interactive learning, and other applications. Often, websites hosting these activities ask for personal information such as name, e-mail, street address, and phone number. In the United States, the children's online privacy protection act (COPPA) of 1998 was enacted in reaction to widespread collection of information from children and subsequent abuses identified by the Federal Trade Commission (FTC). COPPA is aimed at protecting a child's privacy by requiring parental consent before collecting information from children under the age of 13. To date, however, the business practices used and the technical approaches employed to comply with COPPA fail to protect children's online privacy effectively. In this paper, we describe the design of an automated tool for protecting children's online privacy, called POCKET (Parental Online Consent for Kid's Electronic Transactions). The POCKET framework is a novel, technically feasible and legally sound solution to automatically enforce COPPA.},
  language = {en},
  number = {2},
  urldate = {2019-11-16},
  journal = {Decision Support Systems},
  author = {Bélanger, France and Crossler, Robert E. and Hiller, Janine S. and Park, Jung-Min and Hsiao, Michael S.},
  month = jan,
  year = {2013},
  keywords = {Children, COPPA, Design science, Information privacy, IT artifact, Privacy},
  pages = {1161--1173}
}

@incollection{ackerman_socio_2018,
  title={Socio-technical design for the care of people with spinal cord injuries},
  author={Ackerman, Mark S. and Büyüktür, Ayşe G. and Hung, Pei-Yao and Meade, Michelle A and Newman, Mark W},
  booktitle={Designing Healthcare That Works},
  pages={1--18},
  year={2018},
  publisher={Elsevier}
}

@article{alan_tariff_2016,
  title = {Tariff {Agent}: {Interacting} with a {Future} {Smart} {Energy} {System} at {Home}},
  volume = {23},
  issn = {1073-0516},
  shorttitle = {Tariff {Agent}},
  url = {https://doi.org/10.1145/2943770},
  doi = {10.1145/2943770},
  abstract = {Smart systems are becoming increasingly ubiquitous and consequently transforming our lives. The level of system autonomy plays a vital role in the development of smart systems as it profoundly affects how people and these systems interact with each other. However, to date, there are very few studies on human interaction with such systems. This paper presents findings from two field studies where two different prototypes for automating energy tariff-switching were developed and evaluated in the wild. Both prototypes offer flexible autonomy by which users can shift the system's level of autonomy among three options: suggestion-only, semi-autonomy, and full autonomy, whenever they like. Our findings based on thematic analysis show that flexible autonomy is a promising way to sustain users' engagement with smart systems, despite their occasional mistakes. The findings also suggest that users take responsibility for the undesired outcomes of automated actions when delegation of autonomy can be adjusted flexibly.},
  number = {4},
  urldate = {2020-03-23},
  journal = {ACM Transactions on Computer-Human Interaction},
  author = {Alan, Alper T. and Costanza, Enrico and Ramchurn, Sarvapali D. and Fischer, Joel and Rodden, Tom and Jennings, Nicholas R.},
  month = aug,
  year = {2016},
  keywords = {field study, internet of things, flexible autonomy, human--agent interaction, Interactive intelligent systems, smart grid},
  pages = {25:1--25:28}
}

@inproceedings{voida_listening_2005,
  address = {Portland, Oregon, USA},
  series = {{CHI} '05},
  title = {Listening in: practices surrounding {iTunes} music sharing},
  isbn = {978-1-58113-998-3},
  shorttitle = {Listening in},
  url = {https://doi.org/10.1145/1054972.1054999},
  doi = {10.1145/1054972.1054999},
  abstract = {This paper presents a descriptive account of the social practices surrounding the iTunes music sharing of 13 participants in one organizational setting. Specifically, we characterize adoption, critical mass, and privacy; impression management and access control; the musical impressions of others that are created as a result of music sharing; the ways in which participants attempted to make sense of the dynamic system; and implications of the overlaid technical, musical, and corporate topologies. We interleave design implications throughout our results and relate those results to broader themes in a music sharing design space.},
  urldate = {2020-06-01},
  booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
  publisher = {Association for Computing Machinery},
  author = {Voida, Amy and Grinter, Rebecca E. and Ducheneaut, Nicolas and Edwards, W. Keith and Newman, Mark W.},
  month = apr,
  year = {2005},
  keywords = {discovery, iTunes, music sharing},
  pages = {191--200}
}

@book{goffman_the_1978,
  title={The presentation of self in everyday life},
  author={Goffman, Erving and others},
  year={1978},
  publisher={Harmondsworth London}
}

@article{ackerman_intellectual_2000,
  title = {The {Intellectual} {Challenge} of {CSCW}: {The} {Gap} {Between} {Social} {Requirements} and {Technical} {Feasibility}},
  volume = {15},
  issn = {0737-0024},
  url = {http://dl.acm.org/citation.cfm?id=1463015.1463020},
  doi = {10.1207/S15327051HCI1523_5},
  number = {2},
  journal = {Human-Computer Interaction},
  author = {Ackerman, Mark S.},
  month = sep,
  year = {2000},
  pages = {179--203}
}

@inproceedings{kim_co-performing_2019,
  address = {Glasgow, Scotland Uk},
  series = {{CHI} '19},
  title = {Co-{Performing} {Agent}: {Design} for {Building} {User}-{Agent} {Partnership} in {Learning} and {Adaptive} {Services}},
  isbn = {978-1-4503-5970-2},
  shorttitle = {Co-{Performing} {Agent}},
  url = {https://doi.org/10.1145/3290605.3300714},
  doi = {10.1145/3290605.3300714},
  abstract = {Intelligent agents have become prevalent in everyday IT products and services. To improve an agent's knowledge of a user and the quality of personalized service experience, it is important for the agent to cooperate with the user (e.g., asking users to provide their information and feedback). However, few works inform how to support such user-agent co-performance from a human-centered perspective. To fill this gap, we devised Co-Performing Agent, a Wizard-of-Oz-based research probe of an agent that cooperates with a user to learn by helping users to have a partnership mindset. By incorporating the probe, we conducted a two-month exploratory study, aiming to understand how users experience co-performing with their agent over time. Based on the findings, this paper presents the factors that affected users' co-performing behaviors and discusses design implications for supporting constructive co-performance and building a resilient user-agent partnership over time.},
  urldate = {2020-03-23},
  booktitle = {Proceedings of the 2019 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
  publisher = {Association for Computing Machinery},
  author = {Kim, Da-jung and Lim, Youn-kyung},
  month = may,
  year = {2019},
  keywords = {intelligent agents, personalization, co-performance, adaptive services},
  pages = {1--14}
}

@article{carroll_training_1984,
  title = {Training {Wheels} in a {User} {Interface}},
  volume = {27},
  issn = {0001-0782},
  abstract = {New users of high-function application systems can become frustrated and confused by the errors they make in the early stages of learning. A training interface for a commercial word processor was designed to make typical and troublesome error states “unreachable,” thus eliminating the sources of some new-user learning problems. Creating a training environment from the basic function of the system itself afforded substantially faster learning coupled with better learning achievement and better performance on a comprehension post-test. A control group spent almost a quarter of their time recovering from the error states that the training interface blocked off. We speculate on how this training strategy might be refined, and more generally, on how function should be organized in a user interface.},
  number = {8},
  urldate = {2014-04-09},
  journal = {Commun. ACM},
  author = {Carroll, John M. and Carrithers, Caroline},
  month = aug,
  year = {1984},
  keywords = {ease of learning, education, human learning, human-computer interaction, training, Usability, user interface architecture},
  pages = {800--806}
}

@inproceedings{yang_learning_2013,
  address = {Zurich, Switzerland},
  series = {{UbiComp} '13},
  title = {Learning from a learning thermostat: lessons for intelligent systems for the home},
  isbn = {978-1-4503-1770-2},
  shorttitle = {Learning from a learning thermostat},
  url = {https://doi.org/10.1145/2493432.2493489},
  doi = {10.1145/2493432.2493489},
  abstract = {Everyday systems and devices in the home are becoming smarter. In order to better understand the challenges of deploying an intelligent system in the home, we studied the experience of living with an advanced thermostat, the Nest. The Nest utilizes machine learning, sensing, and networking technology, as well as eco-feedback features. We conducted interviews with 23 participants, ten of whom also participated in a three-week diary study. Our findings show that while the Nest was well-received overall, the intelligent features of the Nest were not perceived to be as useful or intuitive as expected, in particular due to the system's inability to understand the intent behind sensed behavior and users' difficulty in understanding how the Nest works. A number of participants developed workarounds for the shortcomings they encountered. Based on our observations, we propose three avenues for future development of interactive intelligent technologies for the home: exception flagging, incidental intelligibility, and constrained engagement.},
  urldate = {2020-03-18},
  booktitle = {Proceedings of the 2013 {ACM} international joint conference on {Pervasive} and ubiquitous computing},
  publisher = {Association for Computing Machinery},
  author = {Yang, Rayoung and Newman, Mark W.},
  month = sep,
  year = {2013},
  keywords = {smart home, sustainability, intelligent systems},
  pages = {93--102}
}
@inproceedings{li_stage-based_2010,
	address = {New York, NY, USA},
	series = {{CHI} '10},
	title = {A {Stage}-based {Model} of {Personal} {Informatics} {Systems}},
	isbn = {978-1-60558-929-9},
	url = {http://doi.acm.org.proxy.lib.umich.edu/10.1145/1753326.1753409},
	doi = {10.1145/1753326.1753409},
	abstract = {People strive to obtain self-knowledge. A class of systems called personal informatics is appearing that help people collect and reflect on personal information. However, there is no comprehensive list of problems that users experience using these systems, and no guidance for making these systems more effective. To address this, we conducted surveys and interviews with people who collect and reflect on personal information. We derived a stage-based model of personal informatics systems composed of five stages (preparation, collection, integration, reflection, and action) and identified barriers in each of the stages. These stages have four essential properties: barriers cascade to later stages; they are iterative; they are user-driven and/or system-driven; and they are uni-faceted or multi-faceted. From these properties, we recommend that personal informatics systems should 1) be designed in a holistic manner across the stages; 2) allow iteration between stages; 3) apply an appropriate balance of automated technology and user control within each stage to facilitate the user experience; and 4) explore support for associating multiple facets of people's lives to enrich the value of systems.},
	urldate = {2014-07-15},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}, {Atlanta}, {Georgia}, {USA}, 10 {April} - 15 {April}, 2010},
	publisher = {ACM},
	author = {Li, Ian and Dey, Anind and Forlizzi, Jodi},
	year = {2010},
	keywords = {barriers, collection, model, personal informatics, reflection},
	pages = {557--566}
}
@online{quantified_self_quantified_2020,
	title = {Quantified {Self} - {Self} {Knowledge} {Through} {Numbers}},
	year = {2020},
	url = {https://quantifiedself.com/},
	language = {en},
	urldate = {2020-07-21},
	journal = {Quantified Self - Self Knowledge Through Numbers},
	author = {{Quantified Self}},
	note = {Library Catalog: quantifiedself.com}
}
@inproceedings{nissen_should_2019,
	address = {New York, NY, USA},
	series = {{CHI} '19},
	title = {Should {I} {Agree}?: {Delegating} {Consent} {Decisions} {Beyond} the {Individual}},
	isbn = {978-1-4503-5970-2},
	shorttitle = {Should {I} {Agree}?},
	url = {http://doi.acm.org/10.1145/3290605.3300745},
	doi = {10.1145/3290605.3300745},
	abstract = {Obtaining meaningful user consent is increasingly problematic in a world of numerous, heterogeneous digital services. Current approaches (e.g. agreeing to Terms and Conditions) are rooted in the idea of individual control despite growing evidence that users do not (or cannot) exercise such control in informed ways. We consider an alternative approach whereby users can opt to delegate consent decisions to an ecosystem of third-parties including friends, experts, groups and AI entities. We present the results of a study that used a technology probe at a large festival to explore initial public responses to this reframing -- focusing on when and to whom users would delegate such decisions. The results reveal substantial public interest in delegating consent and identify differing preferences depending on the privacy context, highlighting the need for alternative decision mechanisms beyond the current focus on individual choice.},
	urldate = {2019-11-07},
	booktitle = {Proceedings of the 2019 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Nissen, Bettina and Neumann, Victoria and Mikusz, Mateusz and Gianni, Rory and Clinch, Sarah and Speed, Chris and Davies, Nigel},
	year = {2019},
	note = {event-place: Glasgow, Scotland Uk},
	keywords = {consent, delegation, design, permission management, privacy, technology probe},
	pages = {515:1--515:13}
}


@inproceedings{colnago_informing_2020,
	address = {Honolulu, HI, USA},
	series = {{CHI} '20},
	title = {Informing the {Design} of a {Personalized} {Privacy} {Assistant} for the {Internet} of {Things}},
	isbn = {978-1-4503-6708-0},
	url = {https://doi.org/10.1145/3313831.3376389},
	doi = {10.1145/3313831.3376389},
	abstract = {Internet of Things (IoT) devices create new ways through which personal data is collected and processed by service providers. Frequently, end users have little awareness of, and even less control over, these devices' data collection. IoT Personalized Privacy Assistants (PPAs) can help overcome this issue by helping users discover and, when available, control the data collection practices of nearby IoT resources. We use semi-structured interviews with 17 participants to explore user perceptions of three increasingly more autonomous potential implementations of PPAs, identifying benefits and issues associated with each implementation. We find that participants weigh the desire for control against the fear of cognitive overload. We recommend solutions that address users' differing automation preferences and reduce notification overload. We discuss open issues related to opting out from public data collections, automated consent, the phenomenon of user resignation, and designing PPAs with at-risk communities in mind.},
	urldate = {2020-05-09},
	booktitle = {Proceedings of the 2020 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {Association for Computing Machinery},
	author = {Colnago, Jessica and Feng, Yuanyuan and Palanivel, Tharangini and Pearman, Sarah and Ung, Megan and Acquisti, Alessandro and Cranor, Lorrie Faith and Sadeh, Norman},
	month = apr,
	year = {2020},
	keywords = {internet of things, inteviews, personalized privacy assistants},
	pages = {1--13}
}
@article{kariotis_emerging_2020,
	title = {Emerging health data platforms: {From} individual control to collective data governance},
	volume = {2},
	issn = {2632-3249},
	shorttitle = {Emerging health data platforms},
	url = {https://www.cambridge.org/core/journals/data-and-policy/article/emerging-health-data-platforms-from-individual-control-to-collective-data-governance/C2FABA49744B674D157DC5E09E15DDCD},
	doi = {10.1017/dap.2020.14},
	abstract = {Health data have enormous potential to transform healthcare, health service design, research, and individual health management. However, health data collected by institutions tend to remain siloed within those institutions limiting access by other services, individuals or researchers. Further, health data generated outside health services (e.g., from wearable devices) may not be easily accessible or useable by individuals or connected to other parts of the health system. There are ongoing tensions between data protection and the use of data for the public good (e.g., research). Concurrently, there are a number of data platforms that provide ways to disrupt these traditional health data siloes, giving greater control to individuals and communities. Through four case studies, this paper explores platforms providing new ways for health data to be used for personal data sharing, self-health management, research, and clinical care. The case-studies include data platforms: PatientsLikeMe, Open Humans, Health Record Banks, and unforgettable.me. These are explored with regard to what they mean for data access, data control, and data governance. The case studies provide insight into a shift from institutional to individual data stewardship. Looking at emerging data governance models, such as data trusts and data commons, points to collective control over health data as an emerging approach to issues of data control. These shifts pose challenges as to how “traditional” health services make use of data collected on these platforms. Further, it raises broader policy questions regarding how to decide what public good data should be put towards.},
	language = {en},
	urldate = {2021-03-12},
	journal = {Data \& Policy},
	author = {Kariotis, Timothy and Ball, Mad Price and Tzovaras, Bastian Greshake and Dennis, Simon and Sahama, Tony and Johnston, Carolyn and Almond, Helen and Borda, Ann},
	year = {2020},
	note = {Publisher: Cambridge University Press},
	keywords = {health data, data governance, data stewardship, Electronic Health Records, emerging data platforms, European Union, General Data Protection Regulation, Health Record Bank, Open Data Institute, Patients Like Me, person generated health data}
}
@inproceedings{liu_improving_2011,
	address = {New York, NY, USA},
	series = {{CSCW} '11},
	title = {Improving {Communication} and {Social} {Support} for {Caregivers} of {High}-risk {Infants} {Through} {Mobile} {Technologies}},
	isbn = {978-1-4503-0556-3},
	url = {http://doi.acm.org/10.1145/1958824.1958897},
	doi = {10.1145/1958824.1958897},
	abstract = {Upon leaving the hospital, parents of high-risk infants experience a variety of challenges in providing care at home. In this work, we present results from a qualitative study to understand the role of social interaction and information-sharing surrounding high-risk infants among both home caregivers and health professionals. These results demonstrate challenges in communication and social support for caregivers of these infants. Based on these results, we present design guidelines for collaborative communication technologies for this population and a prototype system design that demonstrates how these design guidelines might be met in a mobile application. Finally, we discuss how collaborative technologies can serve to improve communication with professionals as well as provide much-needed social support.},
	urldate = {2015-07-27},
	booktitle = {Proceedings of the {ACM} 2011 {Conference} on {Computer} {Supported} {Cooperative} {Work}},
	publisher = {ACM},
	author = {Liu, Leslie S. and Hirano, Sen H. and Tentori, Monica and Cheng, Karen G. and George, Sheba and Park, Sun Young and Hayes, Gillian R.},
	year = {2011},
	keywords = {collaborative health technologies, infants, communication},
	pages = {475--484}
}

@article{suh_parallel_2020,
	title = {Parallel {Journeys} of {Patients} with {Cancer} and {Depression}: {Challenges} and {Opportunities} for {Technology}-{Enabled} {Collaborative} {Care}},
	volume = {4},
	shorttitle = {Parallel {Journeys} of {Patients} with {Cancer} and {Depression}},
	url = {https://doi.org/10.1145/3392843},
	doi = {10.1145/3392843},
	abstract = {Depression is common but under-treated in patients with cancer, despite being a major modifiable contributor to morbidity and early mortality. Integrating psychosocial care into cancer services through the team-based Collaborative Care Management (CoCM) model has been proven to be effective in improving patient outcomes in cancer centers. However, there is currently a gap in understanding the challenges that patients and their care team encounter in managing co-morbid cancer and depression in integrated psycho-oncology care settings. Our formative study examines the challenges and needs of CoCM in cancer settings with perspectives from patients, care managers, oncologists, psychiatrists, and administrators, with a focus on technology opportunities to support CoCM. We find that: (1) patients with co-morbid cancer and depression struggle to navigate between their cancer and psychosocial care journeys, and (2) conceptualizing co-morbidities as separate and independent care journeys is insufficient for characterizing this complex care context. We then propose the parallel journeys framework as a conceptual design framework for characterizing challenges that patients and their care team encounter when cancer and psychosocial care journeys interact. We use the challenges discovered through the lens of this framework to highlight and prioritize technology design opportunities for supporting whole-person care for patients with co-morbid cancer and depression.},
	number = {CSCW1},
	urldate = {2020-06-02},
	journal = {Proceedings of the ACM on Human-Computer Interaction},
	author = {Suh, Jina and Williams, Spencer and Fann, Jesse R. and Fogarty, James and Bauer, Amy M. and Hsieh, Gary},
	month = may,
	year = {2020},
	keywords = {collaborative care, qualitative methods, depression, cancer, health technology, integrated care, whole patient},
	pages = {038:1--038:36}
}

@inproceedings{schroeder_supporting_2017,
  address = {New York, NY, USA},
  series = {{CSCW} '17},
  title = {Supporting {Patient}-{Provider} {Collaboration} to {Identify} {Individual} {Triggers} {Using} {Food} and {Symptom} {Journals}},
  isbn = {978-1-4503-4335-0},
  url = {http://doi.acm.org/10.1145/2998181.2998276},
  doi = {10.1145/2998181.2998276},
  abstract = {Patient-generated data can allow patients and providers to collaboratively develop accurate diagnoses and actionable treatment plans. Unfortunately, patients and providers often lack effective support to make use of such data. We examine patient-provider collaboration to interpret patient-generated data. We focus on irritable bowel syndrome (IBS), a chronic illness in which particular foods can exacerbate symptoms. IBS management often requires patient-provider collaboration using a patient's food and symptom journal to identify the patient's triggers. We contribute interactive visualizations to support exploration of such journals, as well as an examination of patient-provider collaboration in interpreting the journals. Drawing upon individual and collaborative interviews with patients and providers, we find that collaborative review helps improve data comprehension and build mutual trust. We also find a desire to use tools like our interactive visualizations within and beyond clinic appointments. We discuss these findings and present guidance for the design of future tools.},
  urldate = {2017-11-10},
  booktitle = {Proceedings of the 2017 {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} and {Social} {Computing}},
  publisher = {ACM},
  author = {Schroeder, Jessica and Hoffswell, Jane and Chung, Chia-Fang and Fogarty, James and Munson, Sean and Zia, Jasmine},
  year = {2017},
  keywords = {interactive visualization, patient-generated data, patient-provider collaboration, self-tracking, symptom triggers},
  pages = {1726--1739}
}

@article{karat2005usability,
  title={Usability design and evaluation for privacy and security solutions},
  author={Karat, Clare-Marie and Brodie, Carolyn and Karat, John},
  journal={Security and usability},
  pages={47--74},
  year={2005},
  publisher={O’Reilly}
}


@inproceedings{hart2009usable,
  title={Usable privacy controls for blogs},
  author={Hart, Michael and Castille, Claude and Johnson, Rob and Stent, Amanda},
  booktitle={2009 International Conference on Computational Science and Engineering},
  volume={4},
  pages={401--408},
  year={2009},
  organization={IEEE}
}
@inproceedings{goyal_attribute-based_2006,
	address = {New York, NY, USA},
	series = {{CCS} '06},
	title = {Attribute-based {Encryption} for {Fine}-grained {Access} {Control} of {Encrypted} {Data}},
	isbn = {978-1-59593-518-2},
	url = {http://doi.acm.org/10.1145/1180405.1180418},
	doi = {10.1145/1180405.1180418},
	abstract = {As more sensitive data is shared and stored by third-party sites on the Internet, there will be a need to encrypt data stored at these sites. One drawback of encrypting data, is that it can be selectively shared only at a coarse-grained level (i.e., giving another party your private key). We develop a new cryptosystem for fine-grained sharing of encrypted data that we call Key-Policy Attribute-Based Encryption (KP-ABE). In our cryptosystem, ciphertexts are labeled with sets of attributes and private keys are associated with access structures that control which ciphertexts a user is able to decrypt. We demonstrate the applicability of our construction to sharing of audit-log information and broadcast encryption. Our construction supports delegation of private keys which subsumesHierarchical Identity-Based Encryption (HIBE).},
	urldate = {2019-05-16},
	booktitle = {Proceedings of the 13th {ACM} {Conference} on {Computer} and {Communications} {Security}},
	publisher = {ACM},
	author = {Goyal, Vipul and Pandey, Omkant and Sahai, Amit and Waters, Brent},
	year = {2006},
	note = {event-place: Alexandria, Virginia, USA},
	keywords = {access control, attribute-based encryption, audit logs, broadcast encryption, delegation, hierarchical identity-based encryption},
	pages = {89--98}
}

% sensor data set 
@misc{furberg_2016_53894,
  author       = {Furberg, Robert and
                  Brinton, Julia and
                  Keating, Michael  and
                  Ortiz, Alexa},
  title        = {{Crowd-sourced Fitbit datasets 
                   03.12.2016-05.12.2016}},
  month        = may,
  year         = 2016,
  doi          = {10.5281/zenodo.53894},
  url          = {https://doi.org/10.5281/zenodo.53894}
}


@book{hammond2000yes,
  title={Yes, you can!: a guide to self-care for persons with spinal cord injury},
  author={Hammond, Margaret C},
  year={2000},
  publisher={Paralyzed Veterans of America}
}

@book{maddox2006paralysis,
  title={Paralysis resource guide},
  author={Maddox, Sam},
  year={2006},
  publisher={Christopher Reeve found.}
}

@incollection{meade2012expert,
  title={The expert patient and the self-management of chronic conditions and disabilities},
  author={Meade, Michelle A and Cronin, Linda A},
  booktitle={The Oxford Handbook of Rehabilitation Psychology},
  year={2012}
}

% co-design

@article{hieftje_novel_2014,
	title = {Novel {Methods} to {Collect} {Meaningful} {Data} {From} {Adolescents} for the {Development} of {Health} {Interventions}},
	volume = {15},
	issn = {1524-8399},
	url = {https://doi.org/10.1177/1524839914521211},
	doi = {10.1177/1524839914521211},
	abstract = {Health interventions are increasingly focused on young adolescents, and as a result, discussions with this population have become a popular method in qualitative research. Traditional methods used to engage adults in discussions do not translate well to this population, who may have difficulty conceptualizing abstract thoughts and opinions and communicating them to others. As part of a larger project to develop and evaluate a video game for risk reduction and HIV prevention in young adolescents, we were seeking information and ideas from the priority audience that would help us create authentic story lines and character development in the video game. To accomplish this authenticity, we conducted in-depth interviews and focus groups with young adolescents aged 10 to 15 years and employed three novel methods: Storytelling Using Graphic Illustration, My Life, and Photo Feedback Project. These methods helped provide a thorough understanding of the adolescents’ experiences and perspectives regarding their environment and future aspirations, which we translated into active components of the video game intervention. This article describes the processes we used and the valuable data we generated using these three engaging methods. These three activities are effective tools for eliciting meaningful data from young adolescents for the development of health interventions.},
	number = {5},
	urldate = {2019-05-05},
	journal = {Health Promotion Practice},
	author = {Hieftje, Kimberly and Duncan, Lindsay R. and Fiellin, Lynn E.},
	month = sep,
	year = {2014},
	pages = {714--722}
}


@inproceedings{lindberg_participatory_2013,
	address = {New York, NY, USA},
	series = {{IDC} '13},
	title = {Participatory {Design} {Workshops} with {Children} with {Cancer}: {Lessons} {Learned}},
	isbn = {978-1-4503-1918-8},
	shorttitle = {Participatory {Design} {Workshops} with {Children} with {Cancer}},
	url = {http://doi.acm.org/10.1145/2485760.2485840},
	doi = {10.1145/2485760.2485840},
	abstract = {The design and development of information technology for use in health services presents a complex and sensitive situation. It includes not only managing differing interests and situations, but does so in a context that might give rise to negative emotions among the participating users. When the future users are children, this design process becomes even more complex. Participatory design is considered suitable for design with children. The premise for the participation of the children in this study was that they were, or had been treated for cancer. Therefore, their participation could awaken negative emotions, and make the situation difficult for them to handle. How participatory design with children can be conducted in such a sensitive context is therefore explored, grounded in the experience from six design workshops. The workshops evolved around the concept of comics as a way to allow the children to express themselves with familiar means. Three main lessons were learned from the workshops: working in pairs promotes an efficient work situation and the possibility to keep an eye on the children's wellbeing; proxies need to be distanced from the participating children; and the scenarios in the comics set the level of realism of the result.},
	urldate = {2019-05-05},
	booktitle = {Proceedings of the 12th {International} {Conference} on {Interaction} {Design} and {Children}},
	publisher = {ACM},
	author = {Lindberg, Susanne},
	year = {2013},
	note = {event-place: New York, New York, USA},
	keywords = {participatory design, healthcare, children, comics},
	pages = {332--335}
}


@inproceedings{mccarthy_participatory_2017,
	address = {New York, NY, USA},
	series = {{DIS} '17},
	title = {Participatory {Design} to {Address} {Stigma} with {Adolescents} with {Type} 1 {Diabetes}},
	isbn = {978-1-4503-4922-2},
	url = {http://doi.acm.org/10.1145/3064663.3064740},
	doi = {10.1145/3064663.3064740},
	abstract = {Adolescents and young adults with type 1 diabetes are required to use medical devices to test their blood glucose levels regularly. However, using these devices can be stigmatising in various everyday situations. This paper describes a participatory design workshop that explored six strategies for addressing product-related stigma with five young people with type 1 diabetes and five designers. The strategies were to strengthen the product's medical identity, to disguise the product as an accepted non-medical item, to make the device invisible or less confronting, to provide choice and opportunities for personalisation, to strengthen the product's brand identity, and to increase the social power of the device. The workshop resulted in five rapid prototypes for blood glucose monitoring technology that address stigma using a variety of strategies and a discussion of the advantages and disadvantages of each approach. This study elucidates young people's stigma-related user-requirements of blood glucose monitoring technologies.},
	urldate = {2019-05-05},
	booktitle = {Proceedings of the 2017 {Conference} on {Designing} {Interactive} {Systems}},
	publisher = {ACM},
	author = {McCarthy, Gillian M. and Rodriguez Ramírez, Edgar R. and Robinson, Brian J.},
	year = {2017},
	note = {event-place: Edinburgh, United Kingdom},
	keywords = {participatory design, medical devices, adolescents, type 1 diabetes},
	pages = {83--94}
}


@inproceedings{hong_visual_2018,
	address = {New York, NY, USA},
	series = {{CHI} '18},
	title = {Visual {ODLs}: {Co}-{Designing} {Patient}-{Generated} {Observations} of {Daily} {Living} to {Support} {Data}-{Driven} {Conversations} in {Pediatric} {Care}},
	isbn = {978-1-4503-5620-6},
	shorttitle = {Visual {ODLs}},
	url = {http://doi.acm.org/10.1145/3173574.3174050},
	doi = {10.1145/3173574.3174050},
	abstract = {Teens with complex chronic illnesses have difficulty understanding and articulating symptoms such as pain and emotional distress. Yet, symptom communication plays a central role in clinical care and illness management. To understand how design can help overcome these challenges, we created a visual library of 72 sketched illustrations, informed by the Observations of Daily Living framework along with insights from 11 clinician interviews. We utilized our library with storyboarding techniques, free-form sketching, and interviews, in co-design sessions with 13 pairs of chronically-ill teens and their parents. We found that teens depicted symptoms as being interwoven with narratives of personal and social identity. Teens and parents were enthusiastic about collaboratively-generated, interactive storyboards as a tracking and communication mechanism, and suggested three ways in which they could aid in communication and coordination with informal and formal caregivers. In this paper, we detail these findings, to guide the design of tools for symptom-tracking and incorporation of patient-generated data into pediatric care.},
	urldate = {2018-05-05},
	booktitle = {Proceedings of the 2018 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Hong, Matthew K. and Lakshmi, Udaya and Olson, Thomas A. and Wilcox, Lauren},
	year = {2018},
	keywords = {health, participatory design, family, communication, co-design, adolescents, observations of daily living, patient-generated health data},
	pages = {476:1--476:13}
}


% articles


@inproceedings{olson_study_2005,
	address = {New York, NY, USA},
	series = {{CHI} {EA} '05},
	title = {A {Study} of {Preferences} for {Sharing} and {Privacy}},
	isbn = {978-1-59593-002-6},
	url = {http://doi.acm.org/10.1145/1056808.1057073},
	doi = {10.1145/1056808.1057073},
	abstract = {We describe studies of preferences about information sharing aimed at identifying fundamental concerns with privacy and at understanding how people might abstract the details of sharing into higher-level classes of recipients and information that are treated similarly. Thirty people specified what information they are willing to share with whom.. Although people vary in their overall level of comfort in sharing, we identified key classes of recipients and information. Such abstractions highlight the promise of developing expressive controls for sharing and privacy.},
	urldate = {2018-10-26},
	booktitle = {{CHI} '05 {Extended} {Abstracts} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Olson, Judith S. and Grudin, Jonathan and Horvitz, Eric},
	year = {2005},
	keywords = {information sharing, privacy, perceptions of trust},
	pages = {1985--1988}
}

@inproceedings{lederer_who_2003,
	address = {New York, NY, USA},
	series = {{CHI} {EA} '03},
	title = {Who {Wants} to {Know} {What} when? {Privacy} {Preference} {Determinants} in {Ubiquitous} {Computing}},
	isbn = {978-1-58113-637-1},
	shorttitle = {Who {Wants} to {Know} {What} when?},
	url = {http://doi.acm.org/10.1145/765891.765952},
	doi = {10.1145/765891.765952},
	abstract = {We conducted a questionnaire-based study of the relative importance of two factors, inquirer and situation, in determining the preferred accuracy of personal information disclosed through a ubiquitous computing system. We found that privacy preferences varied by inquirer more than by situation. That is, individuals were more likely to apply the same privacy preferences to the same inquirer in different situations than to apply the same privacy preferences to different inquirers in the same situation. We are applying these results to the design of a user interface for managing everyday privacy in ubiquitous computing.},
	urldate = {2019-05-15},
	booktitle = {{CHI} '03 {Extended} {Abstracts} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Lederer, Scott and Mankoff, Jennifer and Dey, Anind K.},
	year = {2003},
	note = {event-place: Ft. Lauderdale, Florida, USA},
	keywords = {empirical methods, hand held devices and mobile computing, quantitative, social and legal issues, ubiquitous computing and smart environments},
	pages = {724--725}
}


@book{schell_art_2015,
	title = {The {Art} of {Game} {Design}: {A} {Book} of {Lenses}, {Second} {Edition}},
	isbn = {978-1-4987-5956-4},
	shorttitle = {The {Art} of {Game} {Design}},
	abstract = {Good game design happens when you view your game from as many perspectives as possible. Written by one of the world's top game designers, The Art of Game Design presents 100+ sets of questions, or different lenses, for viewing a game’s design, encompassing diverse fields such as psychology, architecture, music, visual design, film, software engineering, theme park design, mathematics, puzzle design, and anthropology. This Second Edition of a Game Developer Front Line Award winner:  Describes the deepest and most fundamental principles of game design Demonstrates how tactics used in board, card, and athletic games also work in top-quality video games Contains valuable insight from Jesse Schell, the former chair of the International Game Developers Association and award-winning designer of Disney online games The Art of Game Design, Second Edition gives readers useful perspectives on how to make better game designs faster. It provides practical instruction on creating world-class games that will be played again and again.},
	
	publisher = {CRC Press},
	author = {Schell, Jesse},
	month = sep,
	year = {2015},
	note = {Google-Books-ID: ePcYCwAAQBAJ},
	keywords = {Computers / General, Computers / Desktop Applications / Design \& Graphics, Computers / Computer Graphics, Computers / Programming / Games}
}


@inproceedings{bardram_designing_2013,
	address = {New York, NY, USA},
	series = {{CHI} '13},
	title = {Designing {Mobile} {Health} {Technology} for {Bipolar} {Disorder}: {A} {Field} {Trial} of the {Monarca} {System}},
	isbn = {978-1-4503-1899-0},
	shorttitle = {Designing {Mobile} {Health} {Technology} for {Bipolar} {Disorder}},
	url = {http://doi.acm.org.proxy.lib.umich.edu/10.1145/2470654.2481364},
	doi = {10.1145/2470654.2481364},
	abstract = {An increasing number of pervasive healthcare systems are being designed, that allow people to monitor and get feedback on their health and wellness. To address the challenges of self-management of mental illnesses, we have developed the MONARCA system - a personal monitoring system for bipolar patients. We conducted a 14 week field trial in which 12 patients used the system, and we report findings focusing on their experiences. The results were positive; compared to using paper-based forms, the adherence to self-assessment improved; the system was considered very easy to use; and the perceived usefulness of the system was high. Based on this study, the paper discusses three HCI questions related to the design of personal health technologies; how to design for disease awareness and self-treatment, how to ensure adherence to personal health technologies, and the roles of different types of technology platforms.},
	urldate = {2014-06-27},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Bardram, Jakob E. and Frost, Mads and Szántó, Károly and Faurholt-Jepsen, Maria and Vinberg, Maj and Kessing, Lars Vedel},
	year = {2013},
	keywords = {mental health, mobile application, bipolar disorder, personal health systems},
	pages = {2627--2636}
}


@inproceedings{deterding_game_2011,
	address = {New York, NY, USA},
	series = {{MindTrek} '11},
	title = {From {Game} {Design} {Elements} to {Gamefulness}: {Defining} "{Gamification}"},
	isbn = {978-1-4503-0816-8},
	shorttitle = {From {Game} {Design} {Elements} to {Gamefulness}},
	url = {http://doi.acm.org/10.1145/2181037.2181040},
	doi = {10.1145/2181037.2181040},
	abstract = {Recent years have seen a rapid proliferation of mass-market consumer software that takes inspiration from video games. Usually summarized as "gamification", this trend connects to a sizeable body of existing concepts and research in human-computer interaction and game studies, such as serious games, pervasive games, alternate reality games, or playful design. However, it is not clear how "gamification" relates to these, whether it denotes a novel phenomenon, and how to define it. Thus, in this paper we investigate "gamification" and the historical origins of the term in relation to precursors and similar concepts. It is suggested that "gamified" applications provide insight into novel, gameful phenomena complementary to playful phenomena. Based on our research, we propose a definition of "gamification" as the use of game design elements in non-game contexts.},
	urldate = {2018-08-19},
	booktitle = {Proceedings of the 15th {International} {Academic} {MindTrek} {Conference}: {Envisioning} {Future} {Media} {Environments}},
	publisher = {ACM},
	author = {Deterding, Sebastian and Dixon, Dan and Khaled, Rilla and Nacke, Lennart},
	year = {2011},
	keywords = {games, alternate reality games, serious games, gamification, play, pervasive games, playfulness, game-based technologies, gameful design, gamefulness, playful design},
	pages = {9--15}
}


@inproceedings{eschler_im_2017,
	address = {New York, NY, USA},
	series = {{CSCW} '17},
	title = {"{I}'{M} {So} {Glad} {I} {Met} {You}": {Designing} {Dynamic} {Collaborative} {Support} for {Young} {Adult} {Cancer} {Survivors}},
	isbn = {978-1-4503-4335-0},
	shorttitle = {"{I}'{M} {So} {Glad} {I} {Met} {You}"},
	url = {http://doi.acm.org/10.1145/2998181.2998326},
	doi = {10.1145/2998181.2998326},
	abstract = {Young adult cancer survivors-individuals in their 20's and 30's-must cope with complicated informational and emotional needs that differ from those of other age groups. Although young adult cancer survivors are resourceful in finding information and support to help meet those needs, they face three distinct, ongoing challenges during and after the cancer experience: (1) feeling isolated; (2) confronting a sense of mortality; and (3) struggling with changing body image and identity. We present empirical findings from qualitative interviews with young adult cancer survivors that demonstrate how these challenges change throughout the illness experience, complicating a survivor's search for information and support. We also characterize the adaptive behaviors survivors employ to overcome these challenges. Given these findings, we suggest design implications for online spaces young adult survivors use to collaborate, as well as resources about privacy and self-presentation that can best support survivors in making decisions about shar-ing information.},
	booktitle = {Proceedings of the 2017 {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} and {Social} {Computing}},
	publisher = {ACM},
	author = {Eschler, Jordan and Pratt, Wanda},
	year = {2017},
	keywords = {qualitative methods, online collaboration, health information seeking, young adult cancer},
	pages = {1763--1774}
}


@inproceedings{liu_im_2015,
	address = {New York, NY, USA},
	series = {{CSCW} '15},
	title = {"{I}'{M} {Not} {Like} {My} {Friends}": {Understanding} {How} {Children} with a {Chronic} {Illness} {Use} {Technology} to {Maintain} {Normalcy}},
	isbn = {978-1-4503-2922-4},
	shorttitle = {"{I}'{M} {Not} {Like} {My} {Friends}"},
	url = {http://doi.acm.org/10.1145/2675133.2675201},
	doi = {10.1145/2675133.2675201},
	abstract = {Children diagnosed with a chronic illness, such as cancer, experience a vastly different childhood than their healthy counterparts. They may struggle with accepting that they are no longer seen as "normal". We surveyed 10 children who have a chronic illness and interviewed 15 healthcare professionals and 7 parents of chronically ill children to understand their communication practices and challenges of how these patients stay connected with their peers. We found that due to the nature of their illness and constant hospitalization, pediatric patients often use various communication technologies to stay in touch with friends and try to maintain normalcy in their lives. Some patients also had to create a "new normal" that balanced life before and after being diagnosed. Based on these results, we suggest opportunities for technology to help patients connect to others and retain a sense of normalcy or to encourage them to embrace their "new normal".},
	urldate = {2017-12-18},
	booktitle = {Proceedings of the 18th {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} \& {Social} {Computing}},
	publisher = {ACM},
	author = {Liu, Leslie S. and Inkpen, Kori M. and Pratt, Wanda},
	year = {2015},
	keywords = {health, chronic illness, communication, children, video, asynchronous technologies, normalcy, synchronous technologies},
	pages = {1527--1539}
}


@inproceedings{poole_interaction_2013,
	address = {New York, NY, USA},
	series = {{IDC} '13},
	title = {Interaction {Design} {Research} with {Adolescents}: {Methodological} {Challenges} and {Best} {Practices}},
	isbn = {978-1-4503-1918-8},
	shorttitle = {Interaction {Design} {Research} with {Adolescents}},
	url = {http://doi.acm.org/10.1145/2485760.2485766},
	doi = {10.1145/2485760.2485766},
	abstract = {Adolescents represent nearly one-fifth of the planet's population, yet the interaction design literature offers little guidance on the unique needs, opportunities, and challenges of designing for this age group. In this paper, we provide guidance on interaction design with adolescents, grounded in methodological and behavioral sciences literature. We clarify what adolescence is and what the needs of adolescents are with respect to their cognitive, emotional, social, and physical changes. We present and discuss common pitfalls that can occur in research and design projects involving adolescent populations. We single out of video data gathering methods as a particularly apropos approach to understanding teen populations and offer up an overview our own approach to videography, called 'mobile video collage'. We conclude with a call to the field of interaction design and children to better understand the unique position, needs and values of adolescents.},
	urldate = {2019-05-05},
	booktitle = {Proceedings of the 12th {International} {Conference} on {Interaction} {Design} and {Children}},
	publisher = {ACM},
	author = {Poole, Erika S. and Peyton, Tamara},
	year = {2013},
	note = {event-place: New York, New York, USA},
	keywords = {interaction design, research methods, adolescents},
	pages = {211--217}
}


@inproceedings{hong_care_2016,
	address = {New York, NY, USA},
	series = {{CHI} '16},
	title = {Care {Partnerships}: {Toward} {Technology} to {Support} {Teens}' {Participation} in {Their} {Health} {Care}},
	isbn = {978-1-4503-3362-7},
	shorttitle = {Care {Partnerships}},
	url = {http://doi.acm.org/10.1145/2858036.2858508},
	doi = {10.1145/2858036.2858508},
	abstract = {Adolescents with complex chronic illnesses, such as cancer and blood disorders, must partner with family and clinical caregivers to navigate risky procedures with life-altering implications, burdensome symptoms and lifelong treatments. Yet, there has been little investigation into how technology can support these partnerships. We conducted 38 in-depth interviews (15 with teenage adolescents with chronic forms of cancer and blood disorders, 15 with their parents, and eight with clinical caregivers) along with nine non-participant observations of clinical consultations, to better understand common challenges and needs that could be supported through design. Participants faced challenges primarily concerning: 1) teens' limited participation in their care, 2) communicating emotionally-sensitive information, and 3) managing physical and emotional responses. We draw on these findings to propose design goals for sociotechnical systems to support teens in partnering in their care, highlighting the need for design to support gradually-evolving partnerships.},
	urldate = {2016-05-24},
	booktitle = {Proceedings of the 2016 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Hong, Matthew K. and Wilcox, Lauren and Machado, Daniel and Olson, Thomas A. and Simoneaux, Stephen F.},
	year = {2016},
	keywords = {personal health, families, self-management, chronic illnesses, health information management, Adolescents, Self-management, adolescents},
	pages = {5337--5349}
}


@inproceedings{pollack_closing_2016,
	address = {New York, NY, USA},
	series = {{CHI} '16},
	title = {Closing the {Gap}: {Supporting} {Patients}' {Transition} to {Self}-{Management} {After} {Hospitalization}},
	isbn = {978-1-4503-3362-7},
	shorttitle = {Closing the {Gap}},
	url = {http://doi.acm.org/10.1145/2858036.2858240},
	doi = {10.1145/2858036.2858240},
	abstract = {Patients going home after a hospitalization face many challenges. This transition period exposes patients to unnecessary risks related to inadequate preparation prior to leaving the hospital, potentially leading to errors and patient harm. Although patients engaging in self-management have better health outcomes and increased self-efficacy, little is known about the processes in place to support and develop these skills for patients leaving the hospital. Through qualitative interviews and observations of 28 patients during and after their hospitalizations, we explore the challenges they face transitioning from hospital care to self-management. We identify three key elements in this process: knowledge, resources, and self-efficacy. We describe how both system and individual factors contribute to breakdowns leading to ineffective patient management. This work expands our understanding of the unique challenges faced by patients during this difficult transition and uncovers important design opportunities for supporting crucial yet unmet patient needs.},
	urldate = {2016-05-24},
	booktitle = {Proceedings of the 2016 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Pollack, Ari H. and Backonja, Uba and Miller, Andrew D. and Mishra, Sonali R. and Khelifi, Maher and Kendall, Logan and Pratt, Wanda},
	year = {2016},
	keywords = {health informatics, Medical informatics, self-efficacy, self-management, hospital, pediatric, discharge, Self-management, medical informatics},
	pages = {5324--5336}
}



@inproceedings{miller_partners_2016,
	address = {New York, NY, USA},
	series = {{CSCW} '16},
	title = {Partners in {Care}: {Design} {Considerations} for {Caregivers} and {Patients} {During} a {Hospital} {Stay}},
	isbn = {978-1-4503-3592-8},
	shorttitle = {Partners in {Care}},
	url = {http://doi.acm.org/10.1145/2818048.2819983},
	doi = {10.1145/2818048.2819983},
	abstract = {Informal caregivers, such as close friends and family, play an important role in a hospital patient’s care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregivers’ role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patients’ care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.},
	urldate = {2016-04-04},
	booktitle = {Proceedings of the 19th {ACM} {Conference} on {Computer}-{Supported} {Cooperative} {Work} \& {Social} {Computing}},
	publisher = {ACM},
	author = {Miller, Andrew D. and Mishra, Sonali R. and Kendall, Logan and Haldar, Shefali and Pollack, Ari H. and Pratt, Wanda},
	year = {2016},
	keywords = {CSCW, health informatics, caregiving, caregiver, inpatient, medical informatics.},
	pages = {756--769}
}


@inproceedings{kelley_self-tracking_2017,
	address = {New York, NY, USA},
	series = {{CHI} '17},
	title = {Self-tracking for {Mental} {Wellness}: {Understanding} {Expert} {Perspectives} and {Student} {Experiences}},
	isbn = {978-1-4503-4655-9},
	shorttitle = {Self-tracking for {Mental} {Wellness}},
	url = {http://doi.acm.org/10.1145/3025453.3025750},
	doi = {10.1145/3025453.3025750},
	abstract = {Previous research suggests an important role for self-tracking in promoting mental wellness. Recent studies with college student populations have examined the feasibility of collecting everyday mood, activity, and social data. However, these studies do not account for students' experiences and challenges adopting self-tracking technologies to support mental wellness goals. We present two studies conducted to better understand self-tracking for stress management and mental wellness in student populations. First, focus groups and card sorting activities with 14 student health professionals reveal expert perspectives on the usefulness of tracking for three scenarios. Second, an online survey of 297 students examines personal experiences with self-tracking and attitudes toward sharing self-tracked data with others. We draw on findings from these studies to characterize students' motivations, challenges and preferences in collecting and viewing self-tracked data related to mental wellness, and we compare findings between students with diagnosed mental illnesses and those without. We conclude with a discussion of challenges and opportunities in leveraging self-tracking for mental wellness, highlighting several design considerations.},
	booktitle = {Proceedings of the 2017 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Kelley, Christina and Lee, Bongshin and Wilcox, Lauren},
	year = {2017},
	keywords = {personal informatics, quantified self, self-tracking, self-monitoring, mental health, mental wellness, patient-clinician communication, Health communication, health communication},
	pages = {629--641}
}

@inproceedings{fischer_using_1990,
	address = {New York, NY, USA},
	series = {{CHI} '90},
	title = {Using {Critics} to {Empower} {Users}},
	isbn = {978-0-201-50932-8},
	url = {http://doi.acm.org/10.1145/97243.97305},
	doi = {10.1145/97243.97305},
	abstract = {We describe the critiquing approach to building knowledge-based interactive systems. Critiquing supports computer users in their problem solving and learning activities. The challenges for the next generation of knowledge-based systems provide a context for the development of this paradigm. We discuss critics from the perspective of overcoming the problems of high-functionality computer systems, of providing a new class of systems to support learning, of extending applications-oriented construction kits to design environments, and of providing an alternative to traditional autonomous expert systems. One of the critiquing systems we have built — JANUS, a critic for architectural design — is used as an example of the key aspects of the critiquing process. We also survey additional critiquing systems developed in our and other research groups.},
	urldate = {2017-03-31},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Fischer, Gerhard and Lemke, Andreas C. and Mastaglio, Thomas and Morch, Anders I.},
	year = {1990},
	pages = {337--347}
}



@manual{noauthor_what_2018,
	title = {What {You} {Need} to {Know} {About} {Spinal} {Cord} {Injuries}},
	url = {http://www.hopkinsmedicine.org/healthlibrary/conditions/physical_medicine_and_rehabilitation/spinal_cord_injury_85,P01180/},
	abstract = {A spinal cord injury can result in a bruise, partial tear, or complete tear in the spinal cord. Learn about the different types of SCIs.},
	urldate = {2017-03-25},
	journal = {Johns Hopkins Medicine},
	year = {2018}
}

%@manual{noauthor_cdc_2018,
%	title = {{CDC} - {Cerebral} {Palsy}, {Home} - {NCBDDD}},
%	url = {http://www.cdc.gov/ncbddd/cp/index.html},
%	abstract = {Home page for Cerebral Palsy. CDC estimates that an average of 1 in 303 children in the U.S. have CP.},
%	language = {en-us},
%	urldate = {2015-01-13},
%	year = {2018}
%}

@online{centers_for_disease_control_and_prevention_learn_cp_2020,
	title = {Learn {More} {About} {Cerebral} {Palsy} ({CP}) {\textbar} {CDC}},
	url = {https://www.cdc.gov/ncbddd/cp/index.html},
	abstract = {Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture.},
	language = {en-us},
	urldate = {2021-11-24},
	journal = {Centers for Disease Control and Prevention},
	author = {{Centers for Disease Control and Prevention}},
	month = mar,
	year = {2020}
}


@online{john_hopkins_medicine_acute_2021,
	title = {Acute {Spinal} {Cord} {Injury}},
	url = {https://www.hopkinsmedicine.org/health/conditions-and-diseases/acute-spinal-cord-injury},
	abstract = {Accidents and falls are common causes of acute spinal cord injury.},
	language = {en},
	urldate = {2021-11-24},
	author = {{John Hopkins Medicine}},
	year = {2021}
}



@article{nafus_big_2014,
	title = {Big {Data}, {Big} {Questions}{\textbar} {This} {One} {Does} {Not} {Go} {Up} {To} 11: {The} {Quantified} {Self} {Movement} as an {Alternative} {Big} {Data} {Practice}},
	volume = {8},
	issn = {1932-8036},
	url = {http://ijoc.org/index.php/ijoc/article/view/2170},
	abstract = {Big data is often seen in terms of powerful institutions managing the actions of populations through data. This ethnography of the Quantified Self movement, where participants collect extensive data about their own bodies, identifies practices that go beyond simply internalizing predetermined frameworks. The QS movement attracts the most hungrily panoptical of the data aggregation businesses in addition to people who have developed their own notions of analytics that are separate from, and in relation to, dominant practices of firms and institutionalized scientific production. Their practices constitute an important modality of resistance to dominant modes of living with data, an approach that we call “soft resistance.” Soft resistance happens when participants assume multiple roles as project designers, data collectors, and critical sense-makers who rapidly shift priorities. This constant shifting keeps data sets fragmented and thus creates material resistance to traditional modes of data aggregation. It also breaks the categories that make traditional aggregations appear authoritative. This enables participants to partially yet significantly escape the frames created by the biopolitics of the health technology industry.},
	number = {0},
	journal = {International Journal of Communication},
	author = {Nafus, Dawn and Sherman, Jamie},
	year = {2014}
}


@article{unruh_patients_2007,
	series = {Information {Technology} in {Health} {Care}: {Sociotechnical} {Approaches} {ITHC} 2004},
	title = {Patients as actors: {The} patient's role in detecting, preventing, and recovering from medical errors},
	volume = {76, Supplement 1},
	issn = {1386-5056},
	shorttitle = {Patients as actors},
	url = {http://www.sciencedirect.com/science/article/pii/S1386505606001420},
	doi = {10.1016/j.ijmedinf.2006.05.021},
	abstract = {Patients have the most to gain from reducing medical errors; yet, little research has been done to investigate the role they could or already do play in detecting and preventing errors in their own health care. The purpose of this study is to examine patient's role in detecting, preventing, and recovering from medical errors in outpatient oncology.
In this paper, we use cognitive work analysis and Rasmussen's taxonomy of human performance to describe five cases of medical errors that occurred in an outpatient, cancer-care setting. We detail the role of the patient in each case, and analyze each role using constructs from previous studies of human behavior and errors.
Observational data indicates that patients engage in a range of tasks that identify, prevent, and recover from medical errors in outpatient cancer care. The results of this study point to the importance of considering patients and their work in both the design of patient-care information systems and the structure of clinical-care environments that enable safe and effective health care.},
	urldate = {2014-04-19},
	journal = {International Journal of Medical Informatics},
	author = {Unruh, Kenton T. and Pratt, Wanda},
	month = jun,
	year = {2007},
	keywords = {Consumer health informatics, Information systems, Medical errors, Medical oncology, Patient care},
	pages = {S236--S244}
}

@article{meade_health_2009,
	title = {Health {Mechanics}: {Tools} for the {Self}-{Management} of {Spinal} {Cord} {Injury} and {Disease}},
	journal = {Ann Arbor, MI: University of Michigan},
	author = {Meade, Michelle A.},
	year = {2009}
}

@article{nunes_self-care_2015,
  title={Self-care technologies and collaboration},
  author={Nunes, Francisco and Fitzpatrick, Geraldine},
  journal={International Journal of Human-Computer Interaction},
  volume={31},
  number={12},
  pages={869--881},
  year={2015},
  publisher={Taylor \& Francis}
}


@article{anderson_patient_1995,
	title = {Patient {Empowerment} and the {Traditional} {Medical} {Model}: {A} case of irreconcilable differences?},
	volume = {18},
	copyright = {Copyright © 1995 by the American Diabetes Association},
	issn = {0149-5992, 1935-5548},
	shorttitle = {Patient {Empowerment} and the {Traditional} {Medical} {Model}},
	url = {http://care.diabetesjournals.org/content/18/3/412},
	doi = {10.2337/diacare.18.3.412},
	number = {3},
	urldate = {2017-01-30},
	journal = {Diabetes Care},
	author = {Anderson, Robert M.},
	month = mar,
	year = {1995},
	pmid = {7555490},
	pages = {412--415}
}

@inproceedings{anderson_chronic_2010,
  title={Chronic Care: Making the Case for Ongoing Care},
  author={Anderson, Gerard and Horvath, Jane},
  journal={Baltimore, MD: The Johns Hopkins University},
  year={2010}
}

@inproceedings{botella_safer_2013,
  title={Safer virtual pillbox: assuring medication adherence to elderly patients},
  author={Botella, Federico and Borras, Fernando and Mira, Jose Joaquin},
  booktitle={Proceedings of the 3rd ACM MobiHoc workshop on Pervasive wireless healthcare},
  pages={37--42},
  year={2013},
  organization={ACM}
}


@article{lee_sensor-based_2015,
	title = {Sensor-based {Observations} of {Daily} {Living} for {Aging} in {Place}},
	volume = {19},
	issn = {1617-4909},
	url = {http://dx.doi.org/10.1007/s00779-014-0810-3},
	doi = {10.1007/s00779-014-0810-3},
	abstract = {Older adults often find it difficult to keep track of their cognitive and functional abilities required for remaining independent in their homes. Healthcare providers need objective, timely, and ecologically valid information about their patient's behaviors at home for assessing their patient's condition and whether behavioral problems such as non-adherence are significant problems. Ubiquitous sensors in the home can be used to monitor patient-centered observations of daily living (ODLs) about how well individuals carry out specific tasks that indicate the individual's abilities for living independently. This article demonstrates through a series of case studies that reviewing ODL data about medication taking, phone use, and coffee making can help individual improve their self-awareness of their abilities and also motivate them to improve their performance of their behaviors at least temporarily. This article also demonstrates how physicians when reviewing ODL data about their patient's medication adherence, phone use, and coffee making provided new, provides relevant information for physicians to refine their care plans for their patients. The ODL data indicate to physicians which functional areas the patient was performing well and which areas the patient required closer follow-up or immediate attention. Integrating ODLs into clinical workflows remains a challenge; however, the case studies in this article highlight that the preferred setting to review ODL data was during the patient's visit to the physician's office, so the physician and patient can have a shared understanding of the patient's functioning at home. More proactive reviews of ODLs can be triggered by well-tuned alerts received by other members of the clinical team or informal care network. In summary, observations of daily living about the everyday actions of individuals, if reviewed, can result in greater awareness, motivation for improving behaviors, and better-informed decision making about an individual's health care, enabling individuals to maintain their functional abilities as they age.},
	number = {1},
	urldate = {2015-08-27},
	journal = {Personal Ubiquitous Comput.},
	author = {Lee, Matthew L. and Dey, Anind K.},
	month = jan,
	year = {2015},
	keywords = {Observations of daily living, medication adherence, smart home, ubiquitous computing, sensors},
	pages = {27--43}
}

@inproceedings{mamykina_mahi_2008,
  title={MAHI: investigation of social scaffolding for reflective thinking in diabetes management},
  author={Mamykina, Lena and Mynatt, Elizabeth and Davidson, Patricia and Greenblatt, Daniel},
  booktitle={Proceedings of the SIGCHI Conference on Human Factors in Computing Systems},
  pages={477--486},
  year={2008},
  organization={ACM}
}


@inproceedings{birnholtz_independence_2010,
	address = {New York, NY, USA},
	series = {{CHI} '10},
	title = {Independence and {Interaction}: {Understanding} {Seniors}' {Privacy} and {Awareness} {Needs} for {Aging} in {Place}},
	isbn = {978-1-60558-929-9},
	shorttitle = {Independence and {Interaction}},
	url = {http://doi.acm.org/10.1145/1753326.1753349},
	doi = {10.1145/1753326.1753349},
	abstract = {As America's baby boom population gets older, aging in place -- the idea that seniors can remain independent in a comfortable home environment while being monitored and receiving care from family and caregivers living elsewhere -- has received significant attention. Fostering a sense of independence while simultaneously enabling monitoring and frequent interaction can seem paradoxical, however. This raises questions of how we can design technologies that help seniors retain their independence and a sense of comfort, while still interacting with and being monitored regularly by others. We present results from an interview study of 30 seniors, caregivers and relatives in which we sought to understand how they managed their interactions, availability, privacy and independence. Results suggest that they rely on attributes of the physical environment, temporal structures such as routine conversations and activities, and technological mediation.},
	urldate = {2016-04-28},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Birnholtz, Jeremy and Jones-Rounds, McKenzie},
	year = {2010},
	keywords = {aging in place, awareness, home, seniors, Privacy},
	pages = {143--152}
}


@inproceedings{caldeira_senior_2017,
	address = {New York, NY, USA},
	series = {{CSCW} '17},
	title = {Senior {Care} for {Aging} in {Place}: {Balancing} {Assistance} and {Independence}},
	isbn = {978-1-4503-4335-0},
	shorttitle = {Senior {Care} for {Aging} in {Place}},
	url = {http://doi.acm.org/10.1145/2998181.2998206},
	doi = {10.1145/2998181.2998206},
	abstract = {Increasing demands for senior care raise the challenge of how to support independence in older adults while assisting their health management. Most seniors would like to age in place, but concerns about safety lead many to move to a place that can provide basic care support, such as a Continuing Care Retirement Community (CCRC). CCRCs provide different care levels for seniors, from independent living to nursing home. In this paper we examine how independent residents of a CCRC manage their health through a series of self-care and collaborative care activities. We interviewed 18 independent residents and five staff members of a CCRC. We have found that their care involves both external monitoring and self-care, and self-tracking is an integral part of self-care. These different forms of care are interconnected and complimentary. However, negative connotations associated with aging limit their effectiveness. Examining how these care practices function could inform the design of technology for a broader population of seniors aging in place.},
	booktitle = {Proceedings of the 2017 {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} and {Social} {Computing}},
	publisher = {ACM},
	author = {Caldeira, Clara and Bietz, Matthew and Vidauri, Marisol and Chen, Yunan},
	year = {2017},
	keywords = {self-care, Self-care, aging in place, collaborative care, elderly, older adults, self-tracking, CCRC},
	pages = {1605--1617}
}

@inproceedings{bahirat_data-driven_2018,
	address = {New York, NY, USA},
	series = {{IUI} '18},
	title = {A {Data}-{Driven} {Approach} to {Developing} {IoT} {Privacy}-{Setting} {Interfaces}},
	isbn = {978-1-4503-4945-1},
	url = {http://doi.acm.org/10.1145/3172944.3172982},
	doi = {10.1145/3172944.3172982},
	abstract = {User testing is often used to inform the development of user interfaces (UIs). But what if an interface needs to be developed for a system that does not yet exist? In that case, existing datasets can provide valuable input for UI development. We apply a data-driven approach to the development of a privacy-setting interface for Internet-of-Things (IoT) devices. Applying machine learning techniques to an existing dataset of users' sharing preferences in IoT scenarios, we develop a set of "smart" default profiles. Our resulting interface asks users to choose among these profiles, which capture their preferences with an accuracy of 82\%---a 14\% improvement over a naive default setting and a 12\% improvement over a single smart default setting for all users.},
	urldate = {2018-03-09},
	booktitle = {23rd {International} {Conference} on {Intelligent} {User} {Interfaces}},
	publisher = {ACM},
	author = {Bahirat, Paritosh and He, Yangyang and Menon, Abhilash and Knijnenburg, Bart},
	year = {2018},
	keywords = {machine learning, internet of things, privacy settings, data-driven design},
	pages = {165--176}
}


@article{consolvo_technology_2004,
	title = {Technology for care networks of elders},
	volume = {3},
	issn = {1536-1268},
	doi = {10.1109/MPRV.2004.1316814},
	abstract = {Computer-supported coordinated care uses technology to aid the network of people who support an elder living at home. CSCC supports improved communication among individuals and a balanced distribution of responsibilities to allow the elder to live at home despite increasing care needs. The problem of coordinating the care of elders living at home hasn't been well defined or explored. We focus on using technology to aid the elder's entire support network. To distinguish this space from the broader research issues of computer-supported cooperative work, we call it computer-supported coordinated care and propose that it is a meaningful focus for the pervasive computing, CSCW, and human-computer interaction (HCI) communities.},
	number = {2},
	journal = {IEEE Pervasive Computing},
	author = {Consolvo, S. and Roessler, P. and Shelton, B. E. and LaMarca, A. and Schilit, B. and Bly, S.},
	month = apr,
	year = {2004},
	keywords = {Human computer interaction, human-computer interaction, Information systems, Pervasive computing, ubiquitous computing, aging, computer-supported cooperative work, computer-supported coordinated care, CSCW, Displays, elderly care, geriatrics, groupware, health care, home computing, Space exploration, Space technology, stress, Privacy, HCI},
	pages = {22--29}
}


@inproceedings{toscos_best_2012,
	address = {New York, NY, USA},
	series = {{CHI} '12},
	title = {Best {Intentions}: {Health} {Monitoring} {Technology} and {Children}},
	isbn = {978-1-4503-1015-4},
	shorttitle = {Best {Intentions}},
	url = {http://doi.acm.org/10.1145/2207676.2208603},
	doi = {10.1145/2207676.2208603},
	abstract = {In this paper we describe findings from two studies aimed at understanding how health monitoring technology affects the parent-child relationship, examining emotional response and barriers to using this type of technology. We present suggestions for the design of health monitoring technology intended to enhance self-care in children without creating parent-child conflict. Our recommendations integrate the study findings, developmental stage specific concerns, and prior HCI research aimed at children's health.},
	urldate = {2015-08-26},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Toscos, Tammy and Connelly, Kay and Rogers, Yvonne},
	year = {2012},
	keywords = {pervasive technology, children and parents, diabetes management, health monitoring, understanding users},
	pages = {1431--1440}
}

@inproceedings{epstein_fine-grained_2013,
	address = {New York, NY, USA},
	series = {{UbiComp} '13},
	title = {Fine-grained {Sharing} of {Sensed} {Physical} {Activity}: {A} {Value} {Sensitive} {Approach}},
	isbn = {978-1-4503-1770-2},
	shorttitle = {Fine-grained {Sharing} of {Sensed} {Physical} {Activity}},
	url = {http://doi.acm.org/10.1145/2493432.2493433},
	doi = {10.1145/2493432.2493433},
	abstract = {Personal informatics applications in a variety of domains are increasingly enabled by low cost personal sensing. Although applications capture fine-grained activity for self reflection, sharing is generally limited to high level summaries. There are potential advantages to fine-grained sharing, but also potential harms. To help investigate this complex design space, we employ Value Sensitive Design to consider whether and how to share fine grained step activity. We identify key values and value tensions, and we develop scenarios to highlight these. We then design a set of data transformations that seek to maximize the benefits while minimizing the harms of detailed sharing. These include a novel approach to interactive modification of fine grained step data, allowing people to remove private data and using motif discovery to generate realistic replacement data. Finally, we conduct semi structured interviews with 12 participants examining these scenarios and transformations. We distill results into a set of design considerations for fine-grained physical activity sharing.},
	urldate = {2016-06-20},
	booktitle = {Proceedings of the 2013 {ACM} {International} {Joint} {Conference} on {Pervasive} and {Ubiquitous} {Computing}},
	publisher = {ACM},
	author = {Epstein, Daniel A. and Borning, Alan and Fogarty, James},
	year = {2013},
	keywords = {personal informatics, physical activity sensing, social sharing, value sensitive design},
	pages = {489--498}
}


@inproceedings{vescovi_my_2014,
	address = {New York, NY, USA},
	series = {{UbiComp} '14 {Adjunct}},
	title = {My {Data} {Store}: {Toward} {User} {Awareness} and {Control} on {Personal} {Data}},
	isbn = {978-1-4503-3047-3},
	shorttitle = {My {Data} {Store}},
	url = {http://doi.acm.org/10.1145/2638728.2638745},
	doi = {10.1145/2638728.2638745},
	abstract = {The increasing adoption of smartphones and their capability of collecting personal and contextual information have generated a tremendous increment in the production of (personal) data. The availability of such a huge amount of data represents an invaluable opportunity for organizations and individuals to enable new application scenarios. However, it has also significantly increased the public concern on data privacy. In this paper, we present My Data Store, a tool enabling people to control and share their personal data. We tested My Data Store with 63 participants that used it in order to manage their own data collected from mobile phones and through experience sampling applications. Preliminary results show improvement over the users' awareness of their personal data and the perceived usefulness of the tool.},
	booktitle = {Proceedings of the 2014 {ACM} {International} {Joint} {Conference} on {Pervasive} and {Ubiquitous} {Computing}: {Adjunct} {Publication}},
	publisher = {ACM},
	author = {Vescovi, Michele and Perentis, Christos and Leonardi, Chiara and Lepri, Bruno and Moiso, Corrado},
	year = {2014},
	keywords = {awareness, human factors, personal data, living lab},
	pages = {179--182}
}


@inproceedings{schaub_prical:_2014,
	address = {New York, NY, USA},
	series = {{UbiComp} '14},
	title = {{PriCal}: {Context}-adaptive {Privacy} in {Ambient} {Calendar} {Displays}},
	isbn = {978-1-4503-2968-2},
	shorttitle = {{PriCal}},
	url = {http://doi.acm.org/10.1145/2632048.2632087},
	doi = {10.1145/2632048.2632087},
	abstract = {PriCal is an ambient calendar display that shows a user's schedule similar to a paper wall calendar. PriCal provides context-adaptive privacy to users by detecting present persons and adapting event visibility according to the user's privacy preferences. We present a detailed privacy impact assessment of our system, which provides insights on how to leverage context to enhance privacy without being intrusive. PriCal is based on a decentralized architecture and supports the detection of registered users as well as unknown persons. In a three-week deployment study with seven displays, ten participants used PriCal in their real work environment with their own digital calendars. Our results provide qualitative insights on the implications, acceptance, and utility of context-adaptive privacy in the context of a calendar display system, indicating that it is a viable approach to mitigate privacy implications in ubicomp applications.},
	urldate = {2016-06-16},
	booktitle = {Proceedings of the 2014 {ACM} {International} {Joint} {Conference} on {Pervasive} and {Ubiquitous} {Computing}},
	publisher = {ACM},
	author = {Schaub, Florian and Könings, Bastian and Lang, Peter and Wiedersheim, Björn and Winkler, Christian and Weber, Michael},
	year = {2014},
	keywords = {collaboration, context awareness, groupware calendar systems, mobile interaction, public displays, Privacy},
	pages = {499--510}
}

@inproceedings{wang_veilme_2015,
  title={VeilMe: An interactive visualization tool for privacy configuration of using personality traits},
  author={Wang, Yang and Gou, Liang and Xu, Anbang and Zhou, Michelle X and Yang, Huahai and Badenes, Hernan},
  booktitle={Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems},
  pages={817--826},
  year={2015},
  organization={ACM}
}


@phdthesis{konings_user-centered_2015,
	type = {Dissertation},
	title = {User-centered awareness and control of privacy in {Ubiquitous} {Computing}},
	copyright = {CC BY-NC-ND 3.0 Deutschland},
	url = {https://oparu.uni-ulm.de/xmlui/handle/123456789/3267},
	abstract = {The vision of Ubiquitous Computing (UbiComp) foresees a future of context-aware smart systems which unobtrusively and invisibly support users in their daily activities. Those smart systems pose several risks to users´ privacy. Users might lack awareness about a system´s capabilities to gather data or to intervene in user activities. Furthermore, controlling systems according to privacy preferences constitutes another critical challenge. This work addresses these privacy issues by proposing a user-centered framework to for privacy awareness and control. The concept of territorial privacy is defined, which enriches the dominant information-centric view of most privacy research with physical aspects. Based on this concept, a territorial privacy model for UbiComp is proposed. The graph-based approach of the model allows the identification of dependencies and consequences of control decisions. Channel policies are proposed to allow the instantiation of the model. The policies provide information on an entity´s privacy implications and provide references to available control points for privacy enforcement. Different mechanisms to support the discovery of channel policies and the control of privacy implications have been developed in five discovery and enforcement modules. The modules have been implemented and evaluated for their technical feasibility and effectiveness. To complement these modules, a user interface for user-centered privacy management has been developed. This interface maps an instantiation of the territorial privacy model onto the user level and supports users in controlling systems according to their privacy needs. The user interface was evaluated in a comprehensive scenario-driven user study with several functional prototypes of typical UbiComp systems. The results show that the territorial privacy concept is accepted and that the developed user interface can effectively support users with privacy awareness and control in UbiComp.},
	
	urldate = {2018-05-16},
	school = {Universität Ulm},
	author = {Könings, Bastian},
	month = jul,
	year = {2015},
	doi = {http://dx.doi.org/10.18725/OPARU-3240}
}


@article{ackerman_simplifying_2009,
	title = {Simplifying {User}-{Controlled} {Privacy} {Policies}},
	volume = {8},
	url = {Complete},
	abstract = {{\textless}p{\textgreater}Location-aware computing infrastructures are becoming widely available.{\textless}/p{\textgreater}{\textless}p{\textgreater}However, a key problem remains: letting users manage their privacy while{\textless}/p{\textgreater}{\textless}p{\textgreater}also giving them interesting applications that take advantage of location{\textless}/p{\textgreater}{\textless}p{\textgreater}information.{\textless}/p{\textgreater}},
	journal = {IEEE Pervasive Computing},
	author = {Ackerman, Mark S. and Dong, Tao and Gifford, Scott and Kim, Jungwoo and Newman, Mark W. and Prakash, Atul and Qidwai, Sarah},
	month = sep,
	year = {2009},
	keywords = {location-aware computing, location-based computing, privacy, privacy-enhancing architectures, privacy-protective applications}
}


@inproceedings{junior_investigating_2014,
	address = {New York, NY, USA},
	series = {{GROUP} '14},
	title = {Investigating the {Use} of a {Simulator} to {Support} {Users} in {Anticipating} {Impact} of {Privacy} {Settings} in {Facebook}},
	isbn = {978-1-4503-3043-5},
	url = {http://doi.acm.org/10.1145/2660398.2660419},
	doi = {10.1145/2660398.2660419},
	abstract = {One of the challenges faced by Facebook users is that privacy settings change not only the visibility of the information, but also impact actions other users can take on a piece of information. These actions on their turn can also create changes to the visibility of that piece of information, sometimes granting access to people originally unintended by the user who posted the information. In this paper we investigate how a simulator that allows users to explore the different situations that can result from privacy settings may support them in anticipating the impact of their decisions. To do so, we have implemented a privacy setting simulator prototype, and evaluated it through a qualitative case-study which involved 12 regular Facebook users. Our findings indicate that the simulator improved users understanding of the effects of their privacy settings and allowed them to identify misunderstandings they had about the visibility of their information.},
	booktitle = {Proceedings of the 18th {International} {Conference} on {Supporting} {Group} {Work}},
	publisher = {ACM},
	author = {Junior, Manoel Pereira and Xavier, Simone Isabela de Rezende and Prates, Raquel Oliveira},
	year = {2014},
	keywords = {collaborative systems, configuration, simulation, social network sites, user experience, settings, facebook, Privacy},
	pages = {63--72}
}


@inproceedings{harbach_using_2014,
	address = {New York, NY, USA},
	series = {{CHI} '14},
	title = {Using {Personal} {Examples} to {Improve} {Risk} {Communication} for {Security} \& {Privacy} {Decisions}},
	isbn = {978-1-4503-2473-1},
	url = {http://doi.acm.org/10.1145/2556288.2556978},
	doi = {10.1145/2556288.2556978},
	abstract = {IT security systems often attempt to support users in taking a decision by communicating associated risks. However, a lack of efficacy as well as problems with habituation in such systems are well known issues. In this paper, we propose to leverage the rich set of personal data available on smartphones to communicate risks using personalized examples. Examples of private information that may be at risk can draw the users' attention to relevant information for a decision and also improve their response. We present two experiments that validate this approach in the context of Android app permissions. Private information that becomes accessible given certain permissions is displayed when a user wants to install an app, demonstrating the consequences this installation might have. We find that participants made more privacy-conscious choices when deciding which apps to install. Additionally, our results show that our approach causes a negative affect in participants, which makes them pay more attention.},
	urldate = {2017-12-04},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Harbach, Marian and Hettig, Markus and Weber, Susanne and Smith, Matthew},
	year = {2014},
	keywords = {consequences, examples, usable security, personalization, privacy, android, permissions, risks},
	pages = {2647--2656}
}


@inproceedings{kelley_privacy_2013,
	address = {New York, NY, USA},
	series = {{CHI} '13},
	title = {Privacy {As} {Part} of the {App} {Decision}-making {Process}},
	isbn = {978-1-4503-1899-0},
	url = {http://doi.acm.org/10.1145/2470654.2466466},
	doi = {10.1145/2470654.2466466},
	abstract = {Smartphones have unprecedented access to sensitive personal information. While users report having privacy concerns, they may not actively consider privacy while downloading apps from smartphone application marketplaces. Currently, Android users have only the Android permissions display, which appears after they have selected an app to download, to help them understand how applications access their information. We investigate how permissions and privacy could play a more active role in app-selection decisions. We designed a short "Privacy Facts' display, which we tested in a 20-participant lab study and a 366-participant online experiment. We found that by bringing privacy information to the user when they were making the decision and by presenting it in a clearer fashion, we could assist users in choosing applications that request fewer permissions.},
	urldate = {2017-12-04},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Kelley, Patrick Gage and Cranor, Lorrie Faith and Sadeh, Norman},
	year = {2013},
	keywords = {interface, mobile, privacy, decision-making, android},
	pages = {3393--3402}
}


@inproceedings{almuhimedi_your_2015,
	address = {New York, NY, USA},
	series = {{CHI} '15},
	title = {Your {Location} {Has} {Been} {Shared} 5,398 {Times}!: {A} {Field} {Study} on {Mobile} {App} {Privacy} {Nudging}},
	isbn = {978-1-4503-3145-6},
	shorttitle = {Your {Location} {Has} {Been} {Shared} 5,398 {Times}!},
	url = {http://doi.acm.org/10.1145/2702123.2702210},
	doi = {10.1145/2702123.2702210},
	abstract = {Smartphone users are often unaware of the data collected by apps running on their devices. We report on a study that evaluates the benefits of giving users an app permission manager and sending them nudges intended to raise their awareness of the data collected by their apps. Our study provides both qualitative and quantitative evidence that these approaches are complementary and can each play a significant role in empowering users to more effectively control their privacy. For instance, even after a week with access to the permission manager, participants benefited from nudges showing them how often some of their sensitive data was being accessed by apps, with 95\% of participants reassessing their permissions, and 58\% of them further restricting some of their permissions. We discuss how participants interacted both with the permission manager and the privacy nudges, analyze the effectiveness of both solutions, and derive some recommendations.},
	urldate = {2016-06-16},
	booktitle = {Proceedings of the 33rd {Annual} {ACM} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Almuhimedi, Hazim and Schaub, Florian and Sadeh, Norman and Adjerid, Idris and Acquisti, Alessandro and Gluck, Joshua and Cranor, Lorrie Faith and Agarwal, Yuvraj},
	year = {2015},
	keywords = {mobile, privacy decision making, privacy nudges, privacy, Privacy},
	pages = {787--796}
}


@inproceedings{tsai_turtle_2017,
	address = {Santa Clara, CA},
	title = {Turtle {Guard}: {Helping} {Android} {Users} {Apply} {Contextual} {Privacy} {Preferences}},
	isbn = {978-1-931971-39-3},
	url = {https://www.usenix.org/conference/soups2017/technical-sessions/presentation/tsai},
	abstract = {Current mobile platforms provide privacy management in- terfaces to regulate how applications access sensitive data. Prior research has shown how these interfaces are insufficient from a usability standpoint: they do not account for context. In allowing for more contextual decisions, machine-learning techniques have shown great promise for designing systems that automatically make privacy decisions on behalf of the user. However, if such decisions are made automatically, then feedback mechanisms are needed to empower users to both audit those decisions and correct any errors. In this paper, we describe our user-centered approach to- wards designing a fully functional privacy feedback interface for the Android platform. We performed two large-scale user studies to research the usability of our design. Our second, 580-person validation study showed that users of our new interface were significantly more likely to both understand and control the selected set of circumstances under which applications could access sensitive data when compared to the default Android privacy settings interface.},
	booktitle = {Thirteenth {Symposium} on {Usable} {Privacy} and {Security} ({SOUPS} 2017)},
	publisher = {USENIX Association},
	author = {Tsai, Lynn and Wijesekera, Primal and Reardon, Joel and Reyes, Irwin and Egelman, Serge and Wagner, David and Good, Nathan and Chen, Jung-Wei},
	year = {2017},
	pages = {145--162}
}


@inproceedings{van_kleek_better_2017,
	address = {New York, NY, USA},
	series = {{CHI} '17},
	title = {Better the {Devil} {You} {Know}: {Exposing} the {Data} {Sharing} {Practices} of {Smartphone} {Apps}},
	isbn = {978-1-4503-4655-9},
	shorttitle = {Better the {Devil} {You} {Know}},
	url = {http://doi.acm.org/10.1145/3025453.3025556},
	doi = {10.1145/3025453.3025556},
	abstract = {Most users of smartphone apps remain unaware of what data about them is being collected, by whom, and how these data are being used. In this mixed methods investigation, we examine the question of whether revealing key data collection practices of smartphone apps may help people make more informed privacy-related decisions. To investigate this question, we designed and prototyped a new class of privacy indicators, called Data Controller Indicators (DCIs), that expose previously hidden information flows out of the apps. Our lab study of DCIs suggests that such indicators do support people in making more confident and consistent choices, informed by a more diverse range of factors, including the number and nature of third-party companies that access users' data. Furthermore, personalised DCIs, which are contextualised against the other apps an individual already uses, enable them to reason effectively about the differential impacts on their overall information exposure.},
	urldate = {2017-12-01},
	booktitle = {Proceedings of the 2017 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Van Kleek, Max and Liccardi, Ilaria and Binns, Reuben and Zhao, Jun and Weitzner, Daniel J. and Shadbolt, Nigel},
	year = {2017},
	keywords = {mobile apps, personal data, decision-making, privacy indicators},
	pages = {5208--5220}
}


@inproceedings{ferraiolo_role-based_1992,
	title = {Role-{Based} {Access} {Controls}},
	url = {https://csrc.nist.gov/publications/detail/conference-paper/1992/10/13/role-based-access-controls},
	abstract = {While Mandatory Access Controls (MAC) are appropriate for multilevel secure military applications, Discretionary Access Controls (DAC) are often perceived as meeting the security processing needs of industry and civilian government. This paper argues that reliance on DAC as the principal method of access control is unfounded and inappropriate for many commercial and civilian government organizations. The paper describes a type of non-discretionary access control: role-based access control (RBAC) that is more central to the secure processing needs of non-military systems than DAC.},
	
	urldate = {2019-02-15},
	booktitle = {Proceedings of the 15th {National} {Computer} {Security} {Conference}},
	author = {Ferraiolo, David and Kuhn, Richard},
	month = oct,
	year = {1992},
	pages = {554--563}
}

@article{sandhu_role-based_1996,
	title = {Role-based access control models},
	volume = {29},
	issn = {0018-9162},
	doi = {10.1109/2.485845},
	abstract = {Security administration of large systems is complex, but it can be simplified by a role-based access control approach. This article explains why RBAC is receiving renewed attention as a method of security administration and review, describes a framework of four reference models developed to better understand RBAC and categorizes different implementations, and discusses the use of RBAC to manage itself.},
	number = {2},
	journal = {Computer},
	author = {Sandhu, R. S. and Coyne, E. J. and Feinstein, H. L. and Youman, C. E.},
	month = feb,
	year = {1996},
	keywords = {Access control, authorisation, Authorization, data security, Data security, Government, large systems, NIST, Permission, Privacy, RBAC, reference models, Resource management, role-based access control, security administration, security of data, Software systems, Telephony},
	pages = {38--47}
}


@inproceedings{barhamgi_poster:_2017,
	address = {New York, NY, USA},
	series = {{ASIA} {CCS} '17},
	title = {{POSTER}: {Enabling} {End}-{Users} to {Protect} {Their} {Privacy}},
	isbn = {978-1-4503-4944-4},
	shorttitle = {{POSTER}},
	url = {http://doi.acm.org/10.1145/3052973.3055154},
	doi = {10.1145/3052973.3055154},
	abstract = {In this paper we present our ongoing work to build an approach to empower users of IoT-based cyber physical systems to protect their privacy by themselves. Our approach allows users to identify the privacy risks involved in sharing private data with a data consumer, assess the value of their private data based on identified risks and take a pragmatic data sharing decision balancing the risks with the benefits generated by the sharing. Our approach features a knowledgebase, called the Privacy Oracle, that exploits the power of the Semantic Web to determine how raw metadata can be combined by data consumers to infer privacy-sensitive information as well as the privacy risks associated with the disclosure of inferred information.},
	urldate = {2018-10-20},
	booktitle = {Proceedings of the 2017 {ACM} on {Asia} {Conference} on {Computer} and {Communications} {Security}},
	publisher = {ACM},
	author = {Barhamgi, Mahmoud and Yang, Mu and Yu, Chia-Mu and Yu, Yijun and Bandara, Arosha K. and Benslimane, Djamal and Nuseibeh, Bashar},
	year = {2017},
	keywords = {iot based smart environments, privacy ontologies, privacy},
	pages = {905--907}
}



@inproceedings{boutsis_location_2016,
	address = {New York, NY, USA},
	series = {{UbiComp} '16},
	title = {Location {Privacy} for {Crowdsourcing} {Applications}},
	isbn = {978-1-4503-4461-6},
	url = {http://doi.acm.org/10.1145/2971648.2971741},
	doi = {10.1145/2971648.2971741},
	abstract = {This paper contributes to mobile crowdsourcing applications by developing a privacy preserving framework that enables users to contribute content to the community while controlling their privacy exposure. One fundamental challenge in such applications is how to preserve user privacy, as participants may end up revealing a great deal of user-identified, geo-located data, which can easily unfold user trajectories or sensitive locations (e.g., user's home or work location). In this paper we develop PROMPT, a highly efficient privacy preserving framework that runs locally on mobile devices. PROMPT relies on a novel geometric approximation approach to preserve user privacy, by evaluating the privacy exposure of users before sharing their geo-located data. Our detailed experimental evaluation using real-world datasets illustrates that our approach is effective, practical and has low overhead on smartphones.},
	urldate = {2018-10-20},
	booktitle = {Proceedings of the 2016 {ACM} {International} {Joint} {Conference} on {Pervasive} and {Ubiquitous} {Computing}},
	publisher = {ACM},
	author = {Boutsis, Ioannis and Kalogeraki, Vana},
	year = {2016},
	keywords = {location sharing, coresets, privacy preservation},
	pages = {694--705}
}


@inproceedings{wilson_privacy_2013,
	address = {New York, NY, USA},
	series = {{UbiComp} '13},
	title = {Privacy {Manipulation} and {Acclimation} in a {Location} {Sharing} {Application}},
	isbn = {978-1-4503-1770-2},
	url = {http://doi.acm.org/10.1145/2493432.2493436},
	doi = {10.1145/2493432.2493436},
	abstract = {Location sharing is a popular feature of online social networks, but challenges remain in the effective presentation of privacy choices to users, whose location sharing preferences are complex and diverse. One proposed approach for capturing these nuances builds on the observation that key attributes of users' location sharing preferences can be represented by a small number of privacy profiles, which can provide a basis for configuring individual preferences. However, the impact of this approach on how users view their privacy is relatively unknown. We present a study evaluating the impact of this approach on users' location sharing preferences and their satisfaction with the decisions made by their resulting settings. The results suggest that this approach can influence users to share significantly more without a substantial difference in comfort. This further suggests that the provision of profiles for privacy settings must be carefully considered, as they can substantially alter sharing behavior.},
	urldate = {2018-10-20},
	booktitle = {Proceedings of the 2013 {ACM} {International} {Joint} {Conference} on {Pervasive} and {Ubiquitous} {Computing}},
	publisher = {ACM},
	author = {Wilson, Shomir and Cranshaw, Justin and Sadeh, Norman and Acquisti, Alessandro and Cranor, Lorrie Faith and Springfield, Jay and Jeong, Sae Young and Balasubramanian, Arun},
	year = {2013},
	keywords = {user study, location sharing, mobile computing, privacy},
	pages = {549--558}
}


@inproceedings{lipford_visual_2010,
	address = {New York, NY, USA},
	series = {{CHI} '10},
	title = {Visual vs. {Compact}: {A} {Comparison} of {Privacy} {Policy} {Interfaces}},
	isbn = {978-1-60558-929-9},
	shorttitle = {Visual vs. {Compact}},
	url = {http://doi.acm.org/10.1145/1753326.1753492},
	doi = {10.1145/1753326.1753492},
	abstract = {In this paper, we compare the impact of two different privacy policy representations -- AudienceView and Expandable Grids -- on users modifying privacy policies for a social network site. Despite the very different interfaces, there were very few differences in user performance. However, users had clear, and different, preferences and acknowledged the tradeoffs between the two representations. Our results imply that while either interface would be a usable option for policy settings, a combination may appeal to a wider audience and offer the best of both worlds.},
	urldate = {2018-10-21},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Lipford, Heather Richter and Watson, Jason and Whitney, Michael and Froiland, Katherine and Reeder, Robert W.},
	year = {2010},
	keywords = {access control policy, privacy, social network site},
	pages = {1111--1114}
}


@inproceedings{iachello_control_2005,
	address = {Berlin, Heidelberg},
	series = {{UbiComp}'05},
	title = {Control, {Deception}, and {Communication}: {Evaluating} the {Deployment} of a {Location}-enhanced {Messaging} {Service}},
	isbn = {978-3-540-28760-5},
	shorttitle = {Control, {Deception}, and {Communication}},
	url = {http://dx.doi.org/10.1007/11551201_13},
	doi = {10.1007/11551201_13},
	abstract = {We report on a two-week deployment of a peer-to-peer, mobile, location-enhanced messaging service. This study is specifically aimed at investigating the need for and effectiveness of automatic location disclosure mechanisms, the emerging strategies to achieve plausible deniability, and at understanding how place and activity are used to communicate plans, intentions and provide awareness. We outline the research that motivated this study, briefly describe the application we designed, and provide details of the evaluation process. The results show a lack of value of automatic messaging functions, confirm the need for supporting plausible deniability in communications, and highlight the prominent use of activity instead of place to indicate one's location. Finally, we offer suggestions for the development of social mobile applications.},
	booktitle = {Proceedings of the 7th {International} {Conference} on {Ubiquitous} {Computing}},
	publisher = {Springer-Verlag},
	author = {Iachello, Giovanni and Smith, Ian and Consolvo, Sunny and Abowd, Gregory D. and Hughes, Jeff and Howard, James and Potter, Fred and Scott, James and Sohn, Timothy and Hightower, Jeffrey and LaMarca, Anthony},
	year = {2005},
	pages = {213--231}
}

@inproceedings{reeder_expandable_2008,
	address = {New York, NY, USA},
	series = {{CHI} '08},
	title = {Expandable {Grids} for {Visualizing} and {Authoring} {Computer} {Security} {Policies}},
	isbn = {978-1-60558-011-1},
	url = {http://doi.acm.org/10.1145/1357054.1357285},
	doi = {10.1145/1357054.1357285},
	abstract = {We introduce the Expandable Grid, a novel interaction technique for creating, editing, and viewing many types of security policies. Security policies, such as file permissions policies, have traditionally been displayed and edited in user interfaces based on a list of rules, each of which can only be viewed or edited in isolation. These list-of-rules interfaces cause problems for users when multiple rules interact, because the interfaces have no means of conveying the interactions amongst rules to users. Instead, users are left to figure out these rule interactions themselves. An Expandable Grid is an interactive matrix visualization designed to address the problems that list-of-rules interfaces have in conveying policies to users. This paper describes the Expandable Grid concept, shows a system using an Expandable Grid for setting file permissions in the Microsoft Windows XP operating system, and gives results of a user study involving 36 participants in which the Expandable Grid approach vastly outperformed the native Windows XP file-permissions interface on a broad range of policy-authoring tasks.},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Reeder, Robert W. and Bauer, Lujo and Cranor, Lorrie Faith and Reiter, Michael K. and Bacon, Kelli and How, Keisha and Strong, Heather},
	year = {2008},
	keywords = {visualization, security, expandable grid, file permissions, Privacy, privacy},
	pages = {1473--1482}
}



@article{brooke_sus-quick_1996,
	title = {{SUS}-{A} quick and dirty usability scale},
	volume = {189},
	number = {194},
	journal = {Usability evaluation in industry},
	author = {Brooke, John and {others}},
	year = {1996},
	pages = {4--7}
}


@inproceedings{lewis_factor_2009,
	series = {Lecture {Notes} in {Computer} {Science}},
	title = {The {Factor} {Structure} of the {System} {Usability} {Scale}},
	isbn = {978-3-642-02806-9},
	abstract = {Since its introduction in 1986, the 10-item System Usability Scale (SUS) has been assumed to be unidimensional. Factor analysis of two independent SUS data sets reveals that the SUS actually has two factors – Usable (8 items) and Learnable (2 items – specifically, Items 4 and 10). These new scales have reasonable reliability (coefficient alpha of .91 and .70, respectively). They correlate highly with the overall SUS (r = .985 and .784, respectively) and correlate significantly with one another (r = .664), but at a low enough level to use as separate scales. A sensitivity analysis using data from 19 tests had a significant Test by Scale interaction, providing additional evidence of the differential utility of the new scales. Practitioners can continue to use the current SUS as is, but, at no extra cost, can also take advantage of these new scales to extract additional information from their SUS data. The data support the use of “awkward” rather than “cumbersome” in Item 8.},
	
	booktitle = {Human {Centered} {Design}},
	publisher = {Springer Berlin Heidelberg},
	author = {Lewis, James R. and Sauro, Jeff},
	editor = {Kurosu, Masaaki},
	year = {2009},
	keywords = {usability, factor analysis, learnability, learnable, psychometric evaluation, subjective usability measurement, SUS, System Usability Scale, usable},
	pages = {94--103}
}

@inproceedings{vaniea_evaluating_2008,
	address = {New York, NY, USA},
	series = {{SOUPS} '08},
	title = {Evaluating {Assistance} of {Natural} {Language} {Policy} {Authoring}},
	isbn = {978-1-60558-276-4},
	url = {http://doi.acm.org/10.1145/1408664.1408674},
	doi = {10.1145/1408664.1408674},
	abstract = {The goal of the research study reported here was to investigate policy authors' ability to take descriptions of changes to policy situations and author high-quality, complete policy rules that would parse with high accuracy. As a part of this research, we investigated ways in which we could assist policy authors in writing policies. This paper presents the results of a user study on the effectiveness of providing syntax highlighting in a natural language policy authoring interface. While subjects liked the new interface, they showed no improvement in accuracy when writing rules. We discuss our results in terms of a three phase authoring process that users move through when authoring or modifying policies. We describe this process, discuss why and how our interface failed to support it and make recommendations to designers on how to better support this process.},
	urldate = {2018-10-22},
	booktitle = {Proceedings of the 4th {Symposium} on {Usable} {Privacy} and {Security}},
	publisher = {ACM},
	author = {Vaniea, Kami and Karat, Clare-Marie and Gross, Joshua B. and Karat, John and Brodie, Carolyn},
	year = {2008},
	keywords = {design process, natural language interfaces, privacy policies, privacy, social and legal issues, syntax highlighting},
	pages = {65--73}
}



@article{hassenzahl_interplay_2008,
	title = {The {Interplay} of {Beauty}, {Goodness}, and {Usability} in {Interactive} {Products}},
	volume = {19},
	issn = {0737-0024},
	url = {http://dx.doi.org/10.1207/s15327051hci1904_2},
	doi = {10.1207/s15327051hci1904_2},
	abstract = {Two studies considered the interplay between user-perceived usability (i.e., pragmatic attributes), hedonic attributes (e.g., stimulation, identification), goodness (i.e., satisfaction), and beauty of 4 different MP3-player skins. As long as beauty and goodness stress the subjective valuation of a product, both were related to each other. However, the nature of goodness and beauty was found to differ. Goodness depended on both perceived usability and hedonic attributes. Especially after using the skins, perceived usability became a strong determinant of goodness. In contrast, beauty largely depended on identification; a hedonic attribute group, which captures the product's ability to communicate important personal values to relevant others. Perceived usability as well as goodness was affected by experience (i.e., actual usability, usability problems), whereas hedonic attributes and beauty remained stable over time. All in all, the nature of beauty is rather self-oriented than goal-oriented, whereas goodness relates to both.},
	number = {4},
	urldate = {2018-11-18},
	journal = {Hum.-Comput. Interact.},
	author = {Hassenzahl, Marc},
	month = dec,
	year = {2008},
	pages = {319--349}
}

@online{noauthor_attrakdiff_nodate,
	title = {{AttrakDiff}},
	url = {http://attrakdiff.de/index-en.html},
	urldate = {2018-09-11},
	author = {{User Interface Design GmbH}},
}


@inproceedings{buyuktur_design_2017,
	address = {New York, NY, USA},
	series = {{PervasiveHealth} '17},
	title = {Design {Considerations} for {Semi}-automated {Tracking}: {Self}-care {Plans} in {Spinal} {Cord} {Injury}},
	isbn = {978-1-4503-6363-1},
	shorttitle = {Design {Considerations} for {Semi}-automated {Tracking}},
	url = {http://doi.acm.org/10.1145/3154862.3154870},
	doi = {10.1145/3154862.3154870},
	abstract = {Self-care in Spinal Cord Injury (SCI) is highly complex and individualized. Patients struggle to adapt to life with SCI, especially when they go home after rehabilitation. We conducted a field study to understand how self-care plans work for patients in their lived experience and what requirements there might be for an augmentative system. We found that patients develop their own self-care plans over time, and that routinization plays a key role in SCI self-care. Importantly, self-care activities exist in different states of routinization that have implications for the technological support that should be provided. Our findings suggest that self-care can be supported by different types of semi-automated tracking that account for the different routinization of activities, the collaborative nature of care, and the life-long, dynamic nature of this condition. The findings from our study also extend recent guidelines for semi-automated tracking in health.},
	urldate = {2018-01-23},
	booktitle = {Proceedings of the 11th {EAI} {International} {Conference} on {Pervasive} {Computing} {Technologies} for {Healthcare}},
	publisher = {ACM},
	author = {Büyüktür, Ayşe G. and Ackerman, Mark S. and Newman, Mark W. and Hung, Pei-Yao},
	year = {2017},
	keywords = {quantified self, self-monitoring, rehabilitation, user needs, disability, requirements, semi-automated tracking, context-aware environments, self-care plans},
	pages = {183--192}
}


@article{buyuktur_supporting_2018,
	title = {Supporting {Collaboratively} {Constructed} {Independence}: {A} {Study} of {Spinal} {Cord} {Injury}},
	volume = {2},
	issn = {2573-0142},
	shorttitle = {Supporting {Collaboratively} {Constructed} {Independence}},
	url = {http://doi.acm.org/10.1145/3274295},
	doi = {10.1145/3274295},
	abstract = {Independence is a central concern for people in the care of many chronic conditions. It is often viewed as a goal that can be facilitated with the use of patient data. It is also viewed, especially from the medical side, as something an individual achieves. However, in the lived experience, independence is often a set of collaborative practices. In this paper, we unpack findings from an interview-based study of Spinal Cord Injury (SCI) self-care. We found that independence - both functional and in the form of effecting agency - must be co-constructed by the choices and activities of the care network, including the person with disability, caregivers, and clinicians. This collaboratively shaped independence also affects potential collection and use of data in support of self-care. We describe how collaboratively shaped independence informs requirements and constraints for the design of sensor-based networks for self-care in long-term chronic disability.},
	number = {CSCW},
	urldate = {2018-11-03},
	journal = {Proc. ACM Hum.-Comput. Interact.},
	author = {Büyüktür, Ayşe G. and Hung, Pei-Yao and Newman, Mark W. and Ackerman, Mark S.},
	month = nov,
	year = {2018},
	keywords = {care network, caregiver support, context-aware environments, disability, independence, medical informatics, patient support, pervasive environments, rehabilitation, self-care, self-care plan, self-care routines, self-management, self-management plan},
	pages = {26:1--26:25}
}


@online{wizards_of_the_coast_llc_magic:_2018,
	title = {{MAGIC}: {THE} {GATHERING}},
	shorttitle = {{MAGIC}},
	url = {https://magic.wizards.com/en},
	
	urldate = {2018-02-13},
	journal = {MAGIC: THE GATHERING},
	author = {{Wizards of the Coast LLC}},
	month = may,
	year = {2018}
}


@inproceedings{khan_designing_2010,
	address = {New York, NY, USA},
	series = {{IHI} '10},
	title = {Designing a {Personal} {Health} {Application} for {Older} {Adults} to {Manage} {Medications}},
	isbn = {978-1-4503-0030-8},
	url = {http://doi.acm.org/10.1145/1882992.1883124},
	doi = {10.1145/1882992.1883124},
	abstract = {Older adults with multiple chronic conditions are prone to care transitions, such as seeing a new doctor or being discharged after a prolonged hospital stay. These transitions are often uncoordinated and can imperil patients by omitted, duplicative, or contradictory treatment plans. We developed an open source, web-based Personal Health Application (PHA) using an iterative participatory design process that provides older adults and their caregivers the ability to manage their personal health information during care transitions. We report our findings from six user studies that establish the imperative need for interdisciplinary research and collaboration among all stakeholders - patients, caregivers, health professionals, designers, and health informaticians - to create effective PHAs. We conclude with design guidelines that encourage researchers to gradually increase functionality as users become more proficient interacting with the PHA.},
	urldate = {2014-06-25},
	booktitle = {Proceedings of the 1st {ACM} {International} {Health} {Informatics} {Symposium}},
	publisher = {ACM},
	author = {Khan, Danish U. and Siek, Katie A. and Meyers, Jane and Haverhals, Leah M. and Cali, Steven and Ross, Stephen E.},
	year = {2010},
	keywords = {participatory design, healthcare, elderly, medication management, personal health records, personal health applications},
	pages = {849--858}
}


@inproceedings{collins_barriers_2014,
	address = {New York, NY, USA},
	series = {{OzCHI} '14},
	title = {Barriers to {Engagement} with a {Personal} {Informatics} {Productivity} {Tool}},
	isbn = {978-1-4503-0653-9},
	url = {http://doi.acm.org/10.1145/2686612.2686668},
	doi = {10.1145/2686612.2686668},
	abstract = {Technology helps us get work done but also provides many distractions. As a result, seemingly unproductive activities such as social networking sites (SNS) cause considerable stress. This paper reports a series of studies into whether personal informatics (PI) tools for productivity can make people more aware of their SNS usage and encourage behaviour change. The first two studies took an in-the-wild approach, encouraging students to use a PI tool, RescueTime, to improve their estimations of how much time they spent using SNS, in line with research that had used this technique to reduce participants' stress. However, participants simply did not engage with RescueTime in the studies. A further interview study found that there are four barriers that inhibit engagement with this PI tool and reduce its potential to facilitate behaviour change. In particular, the way it presents data lacks: salience; contextual information; credibility; and action advice.},
	booktitle = {Proceedings of the 26th {Australian} {Computer}-{Human} {Interaction} {Conference} on {Designing} {Futures}: {The} {Future} of {Design}},
	publisher = {ACM},
	author = {Collins, Emily I. M. and Cox, Anna L. and Bird, Jon and Cornish-Tresstail, Cassie},
	year = {2014},
	keywords = {stress, barriers, social networking, engagement, personal informatics tools, productivity},
	pages = {370--379}
}


@inproceedings{garcia_designing_2013,
	series = {Lecture {Notes} in {Computer} {Science}},
	title = {Designing {Personal} {Informatics} for {Self}-reflection and {Self}-awareness: {The} {Case} of {Children} with {Attention} {Deficit} {Hyperactivity} {Disorder}},
	isbn = {978-3-319-03646-5 978-3-319-03647-2},
	shorttitle = {Designing {Personal} {Informatics} for {Self}-reflection and {Self}-awareness},
	url = {https://link.springer.com/chapter/10.1007/978-3-319-03647-2_8},
	doi = {10.1007/978-3-319-03647-2_8},
	abstract = {A main challenge in designing for children with Attention Deficit Hyperactivity Disorder (ADHD) is to support the learning process of supressing undesired behaviour on daily routines by means of positive feedback and rewards. Personal Informatics (PI) is a model that supports capturing and integration of personal data to facilitate reflection and action that is used as a design platform to support behavioral learning. This paper presents a design-driven research study that illustrates the potential of PI to support self-awareness and self-reflection of ADHD children. Two design approaches are described which aim to support self-behavioral inhibition learning: (a) KITA, a Kinesiofeedback Toy for ADHD, being a Tangible User Interface that measures and assesses children’s activity and provides them with feedback as to whether or not behavior is within appropriate limits; and (b) WRISTWIT, a Wearable device presenting information on attention and time for ADHD to increase on-task behavior. KITA and WRISTWIT were tested in the field with children as design means to implement PI to positively modify children behavior during daily school routines.},
	
	urldate = {2017-07-01},
	booktitle = {Ambient {Intelligence}},
	publisher = {Springer, Cham},
	author = {Garcia, Juan Jimenez and Bruyckere, Hilde de and Keyson, David V. and Romero, Natalia},
	month = dec,
	year = {2013},
	pages = {109--123}
}

@inproceedings{mazzia_pviz_2012,
	address = {New York, NY, USA},
	series = {{SOUPS} '12},
	title = {The {PViz} {Comprehension} {Tool} for {Social} {Network} {Privacy} {Settings}},
	isbn = {978-1-4503-1532-6},
	url = {http://doi.acm.org/10.1145/2335356.2335374},
	doi = {10.1145/2335356.2335374},
	abstract = {Users' mental models of privacy and visibility in social networks often involve subgroups within their local networks of friends. Many social networking sites have begun building interfaces to support grouping, like Facebook's lists and "Smart Lists," and Google+'s "Circles." However, existing policy comprehension tools, such as Facebook's Audience View, are not aligned with this mental model. In this paper, we introduce PViz, an interface and system that corresponds more directly with how users model groups and privacy policies applied to their networks. PViz allows the user to understand the visibility of her profile according to automatically-constructed, natural sub-groupings of friends, and at different levels of granularity. Because the user must be able to identify and distinguish automatically-constructed groups, we also address the important sub-problem of producing effective group labels. We conducted an extensive user study comparing PViz to current policy comprehension tools (Facebook's Audience View and Custom Settings page). Our study revealed that PViz was comparable to Audience View for simple tasks, and provided a significant improvement for complex, group-based tasks, despite requiring users to adapt to a new tool. Utilizing feedback from the user study, we further iterated on our design, constructing PViz 2.0, and conducted a follow-up study to evaluate our refinements.},
	booktitle = {Proceedings of the {Eighth} {Symposium} on {Usable} {Privacy} and {Security}},
	publisher = {ACM},
	author = {Mazzia, Alessandra and LeFevre, Kristen and Adar, Eytan},
	year = {2012},
	keywords = {social networks, visualization, Privacy},
	pages = {13:1--13:12}
}


@inproceedings{wang_field_2014,
	address = {New York, NY, USA},
	series = {{CHI} '14},
	title = {A {Field} {Trial} of {Privacy} {Nudges} for {Facebook}},
	isbn = {978-1-4503-2473-1},
	url = {http://doi.acm.org/10.1145/2556288.2557413},
	doi = {10.1145/2556288.2557413},
	abstract = {Anecdotal evidence and scholarly research have shown that Internet users may regret some of their online disclosures. To help individuals avoid such regrets, we designed two modifications to the Facebook web interface that nudge users to consider the content and audience of their online disclosures more carefully. We implemented and evaluated these two nudges in a 6-week field trial with 28 Facebook users. We analyzed participants' interactions with the nudges, the content of their posts, and opinions collected through surveys. We found that reminders about the audience of posts can prevent unintended disclosures without major burden; however, introducing a time delay before publishing users' posts can be perceived as both beneficial and annoying. On balance, some participants found the nudges helpful while others found them unnecessary or overly intrusive. We discuss implications and challenges for designing and evaluating systems to assist users with online disclosures.},
	urldate = {2017-12-04},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Wang, Yang and Leon, Pedro Giovanni and Acquisti, Alessandro and Cranor, Lorrie Faith and Forget, Alain and Sadeh, Norman},
	year = {2014},
	keywords = {social media, privacy, facebook, nudge, behavioral bias, online disclosure, regret, soft-paternalism},
	pages = {2367--2376}
}


@inproceedings{raber_privacy_2016,
	address = {Denver, CO},
	title = {Privacy {Wedges}: {Area}-{Based} {Audience} {Selection} for {Social} {Network} {Posts}},
	url = {https://www.usenix.org/conference/soups2016/workshop-program/wpi/presentation/raber},
	abstract = {We present Privacy Wedges, a user interface designed to allow users of online social networks to make meaningful decisions on who to share their posts with. By displaying the privacy settings for historical posts, it is possible to visualize them in a meaningful and comprehensive way. We conducted a user study with 26 participants that showed that unwanted disclosure could be significantly reduced compared to the current implementation of Facebook. That is, there were significantly fewer posts shown to friends they were not appropriate for or intended for.},
	booktitle = {Twelfth {Symposium} on {Usable} {Privacy} and {Security} ({SOUPS} 2016)},
	publisher = {USENIX Association},
	author = {Raber, Frederic and Luca, Alexander De and Graus, Moritz},
	year = {2016}
}


@inproceedings{amir_care_2015,
	address = {New York, NY, USA},
	series = {{CHI} '15},
	title = {From {Care} {Plans} to {Care} {Coordination}: {Opportunities} for {Computer} {Support} of {Teamwork} in {Complex} {Healthcare}},
	isbn = {978-1-4503-3145-6},
	shorttitle = {From {Care} {Plans} to {Care} {Coordination}},
	url = {http://doi.acm.org/10.1145/2702123.2702320},
	doi = {10.1145/2702123.2702320},
	abstract = {Children with complex health conditions require care from a large, diverse team of caregivers that includes multiple types of medical professionals, parents and community support organizations. Coordination of their outpatient care, essential for good outcomes, presents major challenges. Extensive healthcare research has shown that the use of integrated, team-based care plans improves care coordination, but such plans are rarely deployed in practice. This paper reports on a study of care teams treating children with complex conditions at a major university tertiary care center. This study investigated barriers to plan implementation and resultant care coordination problems. It revealed the complex nature of teamwork in complex care, which poses challenges to team coordination that extend beyond those identified in prior work and handled by existing coordination systems. The paper builds on a computational teamwork theory to identify opportunities for technology to support increased plan-based complex-care coordination and to propose design approaches for systems that enable and enhance such coordination.},
	urldate = {2015-08-30},
	booktitle = {Proceedings of the 33rd {Annual} {ACM} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Amir, Ofra and Grosz, Barbara J. and Gajos, Krzysztof Z. and Swenson, Sonja M. and Sanders, Lee M.},
	year = {2015},
	keywords = {teamwork, care plan, care coordination},
	pages = {1419--1428}
}

@manual{mouseflow_session_2018,
	title = {Session {Replay}, {Heatmaps}, {Funnels}, {Forms} \& {User} {Feedback}},
	url = {https://mouseflow.com/},
	abstract = {Mouseflow is the most popular session replay / recording and website heatmap tool. Sign up today or call +1 (855) 668-7335 for a personal demonstration!},
	
	author = {Mouseflow},
	year = {2008},
	urldate = {2018-11-01},
	journal = {Mouseflow}
}
@article{hayes_interactive_2013,
	title = {Interactive {Systems} for {Health}},
	volume = {20},
	issn = {1072-5520},
	url = {http://doi.acm.org/10.1145/2451856.2451863},
	doi = {10.1145/2451856.2451863},
	abstract = {This forum is dedicated to personal health in all its many facets: decision-making, goal setting, celebration, discovery, reflection, and coordination, among others. We'll look at innovations in interactive technologies and how they help address current critical healthcare challenges. Gillian R. Hayes, Editor},
	number = {3},
	urldate = {2015-07-27},
	journal = {interactions},
	author = {Hayes, Gillian R.},
	month = may,
	year = {2013},
	pages = {20--23}
}



@article{yu_mobile_2011,
	title = {A {Mobile} {Mediation} {Tool} for {Improving} {Interaction} {Between} {Depressed} {Individuals} and {Caregivers}},
	volume = {15},
	issn = {1617-4909},
	url = {http://dx.doi.org/10.1007/s00779-010-0347-z},
	doi = {10.1007/s00779-010-0347-z},
	abstract = {Depression, a common mental disorder, significantly affects an individual's ability to live a normal life. Excessive reassurance-seeking is a common interpersonal behavior characteristic of depression and often leads to negative interaction between caregivers and depressed individuals, who seek excessive assurance from the caregivers at inappropriate times, such as when caregivers are busy. Such negative interaction results in elevated feelings of burden for both caregivers and care receivers. However, maintaining a good relationship between depressed individuals and caregivers is crucial to overcoming difficult times during depression. Therefore, we propose a mobile care mediation system that enables depressed individuals and caregivers to share mood and availability information, thus improving communication in caregiving and care-receiving and reducing the caregiving burden.},
	number = {7},
	urldate = {2015-08-30},
	journal = {Personal Ubiquitous Comput.},
	author = {Yu, Sheng-Hsiang and Wang, Li-Shan and Chu, Hao-Hua and Chen, Sue-Huei and Chen, Cheryl Chai-Hui and You, Chuang-Wen and Huang, Polly},
	month = oct,
	year = {2011},
	keywords = {awareness, Depression, mobile computing, user interface},
	pages = {695--706}
}


@inproceedings{dalgaard_accounting_2013,
	address = {ICST, Brussels, Belgium, Belgium},
	series = {{PervasiveHealth} '13},
	title = {Accounting for {Medication} {Particularities}: {Designing} for {Everyday} {Medication} {Management}},
	isbn = {978-1-936968-80-0},
	shorttitle = {Accounting for {Medication} {Particularities}},
	url = {http://dx.doi.org/10.4108/icst.pervasivehealth.2013.252058},
	doi = {10.4108/icst.pervasivehealth.2013.252058},
	abstract = {Several projects have shown that self-management of medication in private homes can be challenging. Many projects focused on specific illness-related approaches (e.g. diabetes) or practical issues such as how to handle medication while travelling. However, designing for everyday medication management involves more than just specific illness-related strategies and should take into account the broad set of activities conforming people's everyday life. This study investigates how older adults manage their medication in everyday life. To inform the design of pervasive healthcare medication management systems (PHMMS), the study calls for attention to medication-specific particularities that account for: according to need medication, the heterogeneous care network, the substitute medication, the medication informational order, the shared responsibility and the adjustment of medication intake. These medication particularities can enhance the individual's medication overview and support the understanding of medication intake in everyday life. The study also presents five design principles for future design of PHMMS.},
	urldate = {2015-08-18},
	booktitle = {Proceedings of the 7th {International} {Conference} on {Pervasive} {Computing} {Technologies} for {Healthcare}},
	publisher = {ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering)},
	author = {Dalgaard, Lea Gulstav and Grönvall, Erik and Verdezoto, Nervo},
	year = {2013},
	keywords = {qualitative, user-centered design, older adults, medication management, personalized, quantitative},
	pages = {137--144}
}


@inproceedings{bagalkot_magicmirror:_2011,
	address = {New York, NY, USA},
	series = {{CSCW} '11},
	title = {{MagicMirror}: {Towards} {Enhancing} {Collaborative} {Rehabilitation} {Practices}},
	isbn = {978-1-4503-0556-3},
	shorttitle = {{MagicMirror}},
	url = {http://doi.acm.org/10.1145/1958824.1958922},
	doi = {10.1145/1958824.1958922},
	abstract = {In this paper we highlight our realization of the entangled role played by the aspects of self-monitoring and collaborative articulation in facilitating a successful rehabilitation process. We describe the process of sketching-driven-co-exploration with therapists and senior citizens leading to our ongoing work in MyReDiary: a personal device for the senior citizens. While supporting self-monitoring of the rehab process for the senior citizens, it simultaneously acts as a tool for collaboration. Importantly, it aims to provide a language for the senior citizens to discuss their experiences from home.},
	urldate = {2015-08-30},
	booktitle = {Proceedings of the {ACM} 2011 {Conference} on {Computer} {Supported} {Cooperative} {Work}},
	publisher = {ACM},
	author = {Bagalkot, Naveen and Sokoler, Tomas},
	year = {2011},
	keywords = {research-through-design, rehabilitation of senior citizens, tools for collaboration},
	pages = {593--596}
}

@article{chung_identifying_2019,
	title = {Identifying and {Planning} for {Individualized} {Change}: {Patient}-{Provider} {Collaboration} {Using} {Lightweight} {Food} {Diaries} in {Healthy} {Eating} and {Irritable} {Bowel} {Syndrome}},
	volume = {3},
	shorttitle = {Identifying and {Planning} for {Individualized} {Change}},
	url = {https://doi.org/10.1145/3314394},
	doi = {10.1145/3314394},
	abstract = {Identifying and planning strategies that support a healthy lifestyle or manage a chronic disease often require patient-provider collaboration. For example, people with healthy eating goals often share everyday food, exercise, or sleep data with health coaches or nutritionists to find opportunities for change, and patients with irritable bowel syndrome (IBS) often gather food and symptom data as part of working with providers to diagnose and manage symptoms. However, a lack of effective support often prevents health experts from reviewing large amounts of data in time-constrained visits, prevents focusing on individual goals, and prevents generating correct, individualized, and actionable recommendations. To examine how to design photo-based diaries to help people and health experts exchange knowledge and focus on collaboration goals when reviewing the data together, we designed and developed Foodprint, a photo-based food diary. Foodprint includes three components: (1) A mobile app supporting lightweight data collection, (2) a web app with photo-based visualization and quantitative visualizations supporting collaborative reflection, and (3) a pre-visit note communicating an individual's expectations and questions to experts. We deployed Foodprint in two studies: (1) with 17 people with healthy eating goals and 7 health experts, and (2) with 16 IBS patients and 8 health experts. Building upon the lens of boundary negotiating artifacts and findings from two field studies, our research contributes design principles to (1) prepare individuals to collect data relevant to their health goals and for collaboration, (2) help health experts focus on an individual's eating context, experiences, and goals in collaborative review, and (3) support individuals and experts to develop individualized, actionable plans and strategies.},
	number = {1},
	urldate = {2020-05-29},
	journal = {Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies},
	author = {Chung, Chia-Fang and Wang, Qiaosi and Schroeder, Jessica and Cole, Allison and Zia, Jasmine and Fogarty, James and Munson, Sean A.},
	month = mar,
	year = {2019},
	keywords = {collaboration, food, patient-provider collaboration, personal informatics, Self-tracking, patient-generated health data},
	pages = {7:1--7:27}
}




@inproceedings{jacobs_comparing_2015,
	address = {New York, NY, USA},
	series = {{CSCW} '15},
	title = {Comparing {Health} {Information} {Sharing} {Preferences} of {Cancer} {Patients}, {Doctors}, and {Navigators}},
	isbn = {978-1-4503-2922-4},
	url = {http://doi.acm.org/10.1145/2675133.2675252},
	doi = {10.1145/2675133.2675252},
	abstract = {As technologies such as personal health records and symptom trackers become more common, we are seeing an increase in patients actively engaging in health tracking behaviors. Patient collected data can provide valuable insight for healthcare providers, particularly in the area of breast cancer. Thus far, little work has examined whether the health information that patients are willing to track and share aligns with the information needs of healthcare providers. Our work provides a comparison between the health information sharing preferences of breast cancer patients, doctors and navigators. We identify discrepancies between stakeholders' preferences, such as patients' hesitation to share feelings of loneliness, signifying where technology can play an important role in helping patients prioritize the health information shared with providers. We present design implications from this work to guide the development of future health information sharing tools that consider the differing needs of healthcare stakeholders.},
	urldate = {2015-05-25},
	booktitle = {Proceedings of the 18th {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} \& {Social} {Computing}},
	publisher = {ACM},
	author = {Jacobs, Maia L. and Clawson, James and Mynatt, Elizabeth D.},
	year = {2015},
	keywords = {cancer care, cancer navigation, health tracking, physician-patient communication},
	pages = {808--818}
}



@inproceedings{tixier_looking_2015,
	address = {New York, NY, USA},
	series = {{CHI} '15},
	title = {Looking for {Respite} and {Support}: {Technological} {Opportunities} for {Spousal} {Caregivers}},
	isbn = {978-1-4503-3145-6},
	shorttitle = {Looking for {Respite} and {Support}},
	url = {http://doi.acm.org/10.1145/2702123.2702563},
	doi = {10.1145/2702123.2702563},
	abstract = {Our research aims at informing the design of technological solutions to alleviate the stress resulting from the involvement of spouses of Alzheimer's disease patients as caregivers. For so doing, we have observed and analyzed the different offline solutions that are offered by a healthcare network in the Aube region (North-East of France). We discuss the key factors that we have identified for building an effective support network and identify five perspectives for the development of an online social support platform to lower the burden of spousal caregivers.},
	urldate = {2015-08-30},
	booktitle = {Proceedings of the 33rd {Annual} {ACM} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Tixier, Matthieu and Lewkowicz, Myriam},
	year = {2015},
	keywords = {support groups, social support, caregiving, alzheimer's disease, respite care services, spousal caregivers},
	pages = {1155--1158}
}


@article{harkous_polisis:_2018,
	title = {Polisis: {Automated} {Analysis} and {Presentation} of {Privacy} {Policies} {Using} {Deep} {Learning}},
	shorttitle = {Polisis},
	url = {http://arxiv.org/abs/1802.02561},
	abstract = {Privacy policies are the primary channel through which companies inform users about their data collection and sharing practices. In their current form, policies remain long and difficult to comprehend, thus merely serving the goal of legally protecting the companies. Short notices based on information extracted from privacy policies have been shown to be useful and more usable, but face a significant scalability hurdle, given the number of policies and their evolution over time. Companies, users, researchers, and regulators still lack usable and scalable tools to cope with the breadth and depth of privacy policies. To address these hurdles, we propose Polisis, an automated framework for privacy Policies analysis. It enables scalable, dynamic, and multi-dimensional queries on privacy policies. At the core of Polisis is a privacy-centric language model, built with 130K privacy policies, and a novel hierarchy of neural network classifiers that caters to the high-level aspects and the fine-grained details of privacy practices. We demonstrate Polisis's modularity and utility with two robust applications that support structured and free-form querying. The structured querying application is the automated assignment of privacy icons from the privacy policies. With Polisis, we can achieve an accuracy of 88.4\% on this task, when evaluated against earlier annotations by a group of three legal experts. The second application is PriBot, the first free-form Question Answering about Privacy policies. We show that PriBot can produce a correct answer among its top-3 results for 82\% of the test questions.},
	urldate = {2018-05-16},
	journal = {arXiv:1802.02561 [cs]},
	author = {Harkous, Hamza and Fawaz, Kassem and Lebret, Rémi and Schaub, Florian and Shin, Kang G. and Aberer, Karl},
	month = feb,
	year = {2018},
	note = {arXiv: 1802.02561},
	keywords = {Computer Science - Computation and Language, Computer Science - Cryptography and Security, Computer Science - Human-Computer Interaction}
}


@incollection{paterno_design_2017,
	address = {Cham},
	title = {A {Design} {Space} for {End} {User} {Development} in the {Time} of the {Internet} of {Things}},
	isbn = {978-3-319-60291-2},
	url = {https://doi.org/10.1007/978-3-319-60291-2_3},
	abstract = {This paper discusses the issues raised by the Internet of Things for end user development of interactive applications, and how they can be addressed. In such technological setting, applications have to adapt to various types of contextual events, which can be related to users, devices, environments, and social relationships. This calls for environments supporting the development of applications able to cope with dynamic sets of people, objects, devices, and services. The article discusses the characterizing concepts of such environments and their underlying motivations by analysing various solutions proposed to support them and their main design issues. We describe the relevant concepts and discuss how to make them understandable by people without programming experience. One result of this work is a design space, which identifies the main features that should be addressed to support Internet of Things applications using EUD approaches. Such a design space can be used as the basis for comparative discussion amongst various approaches. The analysis provided can also inform the design and development of new tools, and stimulate discussion on current research challenges.},
	
	urldate = {2019-02-10},
	booktitle = {New {Perspectives} in {End}-{User} {Development}},
	publisher = {Springer International Publishing},
	author = {Paternò, Fabio and Santoro, Carmen},
	editor = {Paternò, Fabio and Wulf, Volker},
	year = {2017},
	doi = {10.1007/978-3-319-60291-2_3},
	keywords = {context-dependent applications, End user development, Internet of Things},
	pages = {43--59}
}

@inproceedings{bejugam_enlist:_2011,
	title = {{enList}: {Automatically} {Simplifying} {Privacy} {Policies}},
	shorttitle = {{enList}},
	doi = {10.1109/ICDMW.2011.74},
	abstract = {Online social networking sites have become extremely popular. Due to the pervasiveness of these sites, it is important to provide tools that allow users to specify detailed policies controlling access to their data. However, the policies specified using existing tools are often complex, verbose, and difficult to understand. In this paper, we study the policy simplification problem. Given a complex or verbose policy, our goal is to automatically produce an equivalent policy that is easier to understand. We propose a novel framework called enList, which automatically extracts friend "lists" (semantically meaningful subgroups of a user's friends) and then simplifies an existing policy using the lists. A laboratory-based user study confirms that the resulting policies are easier for users to comprehend, remember, and maintain than the policies produced by an existing recommendation tool.},
	booktitle = {2011 {IEEE} 11th {International} {Conference} on {Data} {Mining} {Workshops}},
	author = {Bejugam, Rajesh and LeFevre, Kristen},
	month = dec,
	year = {2011},
	note = {ISSN: 2375-9232, 2375-9259},
	keywords = {Educational institutions, Social network services, authorisation, recommender systems, social networking (online), access control, privacy policies, Privacy, data privacy, Facebook, Complexity theory, Algorithms, Communities, enList, laboratory based user study, online social networking sites, Partitioning algorithms, policy simplification problem, recommendation tool},
	pages = {620--627}
}


@inproceedings{rooksby_personal_2014,
	address = {New York, NY, USA},
	series = {{CHI} '14},
	title = {Personal {Tracking} {As} {Lived} {Informatics}},
	isbn = {978-1-4503-2473-1},
	url = {http://doi.acm.org.proxy.lib.umich.edu/10.1145/2556288.2557039},
	doi = {10.1145/2556288.2557039},
	abstract = {This paper characterises the use of activity trackers as "lived informatics". This characterisation is contrasted with other discussions of personal informatics and the quantified self. The paper reports an interview study with activity tracker users. The study found: people do not logically organise, but interweave various activity trackers, sometimes with ostensibly the same functionality; that tracking is often social and collaborative rather than personal; that there are different styles of tracking, including goal driven tracking and documentary tracking; and that tracking information is often used and interpreted with reference to daily or short term goals and decision making. We suggest there will be difficulties in personal informatics if we ignore the way that personal tracking is enmeshed with everyday life and people's outlook on their future.},
	urldate = {2014-05-28},
	booktitle = {Proceedings of the {32Nd} {Annual} {ACM} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Rooksby, John and Rost, Mattias and Morrison, Alistair and Chalmers, Matthew Chalmers},
	year = {2014},
	keywords = {activity tracking, data, qualitative methods},
	pages = {1163--1172}
}

@article{figueiredo_patient-generated_2020,
	title = {Patient-{Generated} {Health} {Data}: {Dimensions}, {Challenges}, and {Open} {Questions}},
	volume = {13},
	issn = {1551-3955, 1551-3963},
	shorttitle = {Patient-{Generated} {Health} {Data}},
	url = {https://www.nowpublishers.com/article/Details/HCI-080?fbclid=IwAR0OaUJ1tWXFQIiKny5ynmMrb44iI-B_rPLXWX9tMbNW0o46JpYpWK-NnIk},
	doi = {10.1561/1100000080},
	abstract = {Patient-Generated Health Data: Dimensions, Challenges, and Open Questions},
	number = {3},
	urldate = {2020-04-24},
	journal = {Foundations and Trends® in Human-Computer Interaction},
	author = {Figueiredo, Mayara Costa and Chen, Yunan},
	month = apr,
	year = {2020},
	note = {Publisher: Now Publishers, Inc.},
	pages = {165--297}
}


@article{choe_semi-automated_2017,
	title = {Semi-{Automated} {Tracking}: {A} {Balanced} {Approach} for {Self}-{Monitoring} {Applications}},
	volume = {16},
	issn = {1536-1268},
	shorttitle = {Semi-{Automated} {Tracking}},
	doi = {10.1109/MPRV.2017.18},
	abstract = {The authors present an approach for designing self-monitoring technology called "semi-automated tracking," which combines both manual and automated data collection methods. Through this approach, they aim to lower the capture burdens, collect data that is typically hard to track automatically, and promote awareness to help people achieve their self-monitoring goals. They first specify three design considerations for semi-automated tracking: data capture feasibility, the purpose of self-monitoring, and the motivation level. They then provide examples of semi-automated tracking applications in the domains of sleep, mood, and food tracking to demonstrate strategies they developed to find the right balance between manual tracking and automated tracking, combining each of their benefits while minimizing their associated limitations.},
	number = {1},
	journal = {IEEE Pervasive Computing},
	author = {Choe, E. K. and Abdullah, S. and Rabbi, M. and Thomaz, E. and Epstein, D. A. and Cordeiro, F. and Kay, M. and Abowd, G. D. and Choudhury, T. and Fogarty, J. and Lee, B. and Matthews, M. and Kientz, J. A.},
	month = jan,
	year = {2017},
	keywords = {Informatics, Insulation life, Medical devices, Mood tracking, Pervasive computing, bioinformatics, data collection, food tracking, healthcare, internet of things, mobile, personal informatics, self-monitoring, semi-automated tracking, sleep tracking, data analysis, sensors, monitoring},
	pages = {74--84}
}

@inproceedings{gronvall_beyond_2013,
	address = {New York, NY, USA},
	series = {{UbiComp} '13},
	title = {Beyond {Self}-monitoring: {Understanding} {Non}-functional {Aspects} of {Home}-based {Healthcare} {Technology}},
	isbn = {978-1-4503-1770-2},
	shorttitle = {Beyond {Self}-monitoring},
	url = {http://doi.acm.org/10.1145/2493432.2493495},
	doi = {10.1145/2493432.2493495},
	abstract = {Monitoring of health parameters in non-clinical settings is one strategy to address the increasingly aging population and age-related disabilities and diseases. However, challenges exist when introducing self-monitoring activities in people's everyday life. An active lifestyle can challenge the appropriation of healthcare technologies and people with comorbidity may have diverse but co-existing monitoring needs. In this paper, we seek to understand home-based health monitoring practices to better design and integrate them into people's everyday life. We perform an analysis of socio-technical complexities in home-based healthcare technologies through three case studies of self-monitoring: 1) pre-eclampsia (i.e. pregnancy poisoning), 2) heart conditions, and 3) preventive care. Through the analysis seven themes emerged (people, resources, places, routines, knowledge, control and motivation) that can facilitate the understanding of home-based healthcare activities. We present three modes of self-monitoring use and provide a set of design recommendations for future Ubicomp designs of home-based healthcare technology.},
	urldate = {2016-12-21},
	booktitle = {Proceedings of the 2013 {ACM} {International} {Joint} {Conference} on {Pervasive} and {Ubiquitous} {Computing}},
	publisher = {ACM},
	author = {Grönvall, Erik and Verdezoto, Nervo},
	year = {2013},
	keywords = {case studies, home-based healthcare technology, personal health management., self-monitoring},
	pages = {587--596}
}


@inproceedings{ayobi_quantifying_2017,
	address = {Denver, Colorado, USA},
	series = {{CHI} '17},
	title = {Quantifying the {Body} and {Caring} for the {Mind}: {Self}-{Tracking} in {Multiple} {Sclerosis}},
	isbn = {978-1-4503-4655-9},
	shorttitle = {Quantifying the {Body} and {Caring} for the {Mind}},
	url = {https://doi.org/10.1145/3025453.3025869},
	doi = {10.1145/3025453.3025869},
	abstract = {Consumer health technologies have an enormous potential to transform the self-management of chronic conditions. However, it is unclear how individuals use self-tracking technologies to manage them. This in-depth interview study explores self-tracking practices in multiple sclerosis (MS), a complex neurological disease that causes physical, cognitive, and psychological symptoms. Our findings illustrate that when faced the unpredictable and degenerative nature of MS, individuals regained a sense of control by intertwining self-care practices with different self-tracking technologies. They engaged in disease monitoring, fitness tracking, and life journaling to quantify the body and care for the mind. We focus attention on the role of emotional wellbeing and the experience of control in self-tracking and managing MS. Finally, we discuss in which ways self-tracking technologies could support the experiential nature of control and foster mindful experiences rather than focusing only on tracking primary disease indicators.},
	urldate = {2020-06-20},
	booktitle = {Proceedings of the 2017 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {Association for Computing Machinery},
	author = {Ayobi, Amid and Marshall, Paul and Cox, Anna L. and Chen, Yunan},
	month = may,
	year = {2017},
	keywords = {chronic conditions, personal informatics, self-tracking, self-care technologies, multiple sclerosis, perceived control},
	pages = {6889--6901}
}

@inproceedings{felipe_roles_2015,
	title = {Roles for {Personal} {Informatics} in chronic pain},
	doi = {10.4108/icst.pervasivehealth.2015.259501},
	abstract = {Self-management of chronic pain is a complex and demanding activity. Multidisciplinary pain management programs are designed to provide patients with the skills to improve, maintain functioning and self-manage their pain but gains diminish in the long-term due to lack of support from clinicians. Sensing technology can be a cost-effective way to extend support for self-management outside clinical settings but they are currently under-explored. In this paper, we report studies carried out to investigate how Personal Informatics Systems (PIS) based on wearable body sensing technology could facilitate pain self-management and functioning. Five roles for PIS emerged from a qualitative study with people with chronic pain and physiotherapists: (i) assessment, planning and prevention (ii) a direct supervisory and co-management role, (iii) facilitating deeper understanding, (iv) managing emotional states, and (v) sharing for social acceptability. A web-based survey was conducted to understand the parameters that should be tracked to support self-management and what tracked information should be shared with others. Finally, we suggest an extension to previous PIS models and propose design implications to address immediate, short-term and long-term information needs for personal use of people with chronic pain and for sharing with others.},
	booktitle = {2015 9th {International} {Conference} on {Pervasive} {Computing} {Technologies} for {Healthcare} ({PervasiveHealth})},
	author = {Felipe, Sergio and Singh, Aneesha and Bradley, Caroline and Williams, Amanda CdeC and Bianchi-Berthouze, Nadia},
	month = may,
	year = {2015},
	keywords = {self-management, Informatics, chronic pain, emotional wellbeing, interviews, pain, personal informatics, physiological sensing, psychology, quantified-self, wearables, sensors, monitoring, Self-management, data visualization},
	pages = {161--168}
}



@inproceedings{choe_understanding_2014,
	address = {New York, NY, USA},
	series = {{CHI} '14},
	title = {Understanding {Quantified}-selfers' {Practices} in {Collecting} and {Exploring} {Personal} {Data}},
	isbn = {978-1-4503-2473-1},
	url = {http://doi.acm.org.proxy.lib.umich.edu/10.1145/2556288.2557372},
	doi = {10.1145/2556288.2557372},
	abstract = {Researchers have studied how people use self-tracking technologies and discovered a long list of barriers including lack of time and motivation as well as difficulty in data integration and interpretation. Despite the barriers, an increasing number of Quantified-Selfers diligently track many kinds of data about themselves, and some of them share their best practices and mistakes through Meetup talks, blogging, and conferences. In this work, we aim to gain insights from these "extreme users," who have used existing technologies and built their own workarounds to overcome different barriers. We conducted a qualitative and quantitative analysis of 52 video recordings of Quantified Self Meetup talks to understand what they did, how they did it, and what they learned. We highlight several common pitfalls to self-tracking, including tracking too many things, not tracking triggers and context, and insufficient scientific rigor. We identify future research efforts that could help make progress toward addressing these pitfalls. We also discuss how our findings can have broad implications in designing and developing self-tracking technologies.},
	urldate = {2014-05-28},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Choe, Eun Kyoung and Lee, Nicole B. and Lee, Bongshin and Pratt, Wanda and Kientz, Julie A.},
	year = {2014},
	keywords = {per-sonal informatics, personal analytics, quantified self, self-experimentation., self-monitoring, self-tracking, health},
	pages = {1143--1152}
}


@article{raj_understanding_2017,
	title = {Understanding {Individual} and {Collaborative} {Problem}-{Solving} with {Patient}-{Generated} {Data}: {Challenges} and {Opportunities}},
	volume = {1},
	issn = {2573-0142},
	shorttitle = {Understanding {Individual} and {Collaborative} {Problem}-{Solving} with {Patient}-{Generated} {Data}},
	url = {http://doi.acm.org/10.1145/3134723},
	doi = {10.1145/3134723},
	abstract = {Making effective use of patient-generated data (PGD) is challenging for both patients and providers. Designing systems to support collaborative and individual use of PGD is a topic of importance in CSCW, considering the limitations of informatics tools. To inform better system design, we conducted a study including focus groups, observations and interviews with patients and providers to understand how PGD is interpreted and used. We found that while PGD is useful for identifying and solving disease-related problems, the following differences in patient-provider perceptions challenge its effective use - different perceptions about what is a problem, selecting what kinds of problems to focus on, and using different data representations. Drawing on these insights, we reflect on two specific conceptualizations of disease management behavior (sensemaking and problem-solving) as they relate to data specific activities of patients and providers and provide design suggestions for tools to support collaborative and individual use of PGD.},
	number = {CSCW},
	urldate = {2018-10-20},
	journal = {Proc. ACM Hum.-Comput. Interact.},
	author = {Raj, Shriti and Newman, Mark W. and Lee, Joyce M. and Ackerman, Mark S.},
	month = dec,
	year = {2017},
	keywords = {diabetes, patient-generated data, patient-provider collaboration, personal informatics, reflection, chronic disease management, interpreting data, problem-solving},
	pages = {88:1--88:18}
}


@inproceedings{karkar_tummytrials:_2017,
	address = {New York, NY, USA},
	series = {{CHI} '17},
	title = {{TummyTrials}: {A} {Feasibility} {Study} of {Using} {Self}-{Experimentation} to {Detect} {Individualized} {Food} {Triggers}},
	isbn = {978-1-4503-4655-9},
	shorttitle = {{TummyTrials}},
	url = {http://doi.acm.org/10.1145/3025453.3025480},
	doi = {10.1145/3025453.3025480},
	abstract = {Diagnostic self-tracking, the recording of personal information to diagnose or manage a health condition, is a common practice, especially for people with chronic conditions. Unfortunately, many who attempt diagnostic self tracking have trouble accomplishing their goals. People often lack knowledge and skills needed to design and conduct scientifically rigorous experiments, and current tools provide little support. To address these shortcomings and explore opportunities for diagnostic self tracking, we designed, developed, and evaluated a mobile app that applies a self experimentation framework to support patients suffering from irritable bowel syndrome (IBS) in identifying their personal food triggers. TummyTrials aids a person in designing, executing, and analyzing self experiments to evaluate whether a specific food triggers their symptoms. We examined the feasibility of this approach in a field study with 15 IBS patients, finding that participants could use the tool to reliably undergo a self-experiment. However, we also discovered an underlying tension between scientific validity and the lived experience of self experimentation. We discuss challenges of applying clinical research methods in everyday life, motivating a need for the design of self experimentation systems to balance rigor with the uncertainties of everyday life.},
	urldate = {2017-12-01},
	booktitle = {Proceedings of the 2017 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Karkar, Ravi and Schroeder, Jessica and Epstein, Daniel A. and Pina, Laura R. and Scofield, Jeffrey and Fogarty, James and Kientz, Julie A. and Munson, Sean A. and Vilardaga, Roger and Zia, Jasmine},
	year = {2017},
	keywords = {food, personal informatics, self-experimentation, self-tracking, symptom triggers, irritable bowel syndrome},
	pages = {6850--6863}
}

@article{murnane_personal_2018,
	title = {Personal {Informatics} in {Interpersonal} {Contexts}: {Towards} the {Design} of {Technology} that {Supports} the {Social} {Ecologies} of {Long}-{Term} {Mental} {Health} {Management}},
	volume = {2},
	shorttitle = {Personal {Informatics} in {Interpersonal} {Contexts}},
	url = {https://doi.org/10.1145/3274396},
	doi = {10.1145/3274396},
	abstract = {Personal informatics systems for supporting health largely grew out of a "self"-centric orientation: self-tracking, self-reflection, self-knowledge, self-experimentation, self-improvement. Health management, however, even when self-driven, is inherently social and depends on a person's direct relationships and broader sociocultural contexts, as an emerging line of research is coming to recognize, study, and support. This is particularly true in the case of mental health. In this paper, we engage with individuals managing the serious mental illness bipolar disorder and members of their support circles to (a) identify key social relations and the roles they play in condition management, (b) characterize patients' complex interactions with these relations (e.g., positive or negative, direct or peripheral, steady or unstable), and (c) understand how personal informatics mediates these recovery relations. Based on these insights, we offer a model of this social ecology, along with design implications for personal informatics systems that are sensitive to these interpersonal contexts.},
	number = {CSCW},
	urldate = {2020-02-17},
	journal = {Proceedings of the ACM on Human-Computer Interaction},
	author = {Murnane, Elizabeth L. and Walker, Tara G. and Tench, Beck and Voida, Stephen and Snyder, Jaime},
	month = nov,
	year = {2018},
	keywords = {self-management, bipolar disorder, collaborative sensemaking, collective intelligence, mental health, personal informatics, quantified self, serious mental illness},
	pages = {127:1--127:27}
}


@inproceedings{pina_personal_2017,
	address = {New York, NY, USA},
	series = {{CSCW} '17},
	title = {From {Personal} {Informatics} to {Family} {Informatics}: {Understanding} {Family} {Practices} {Around} {Health} {Monitoring}},
	isbn = {978-1-4503-4335-0},
	shorttitle = {From {Personal} {Informatics} to {Family} {Informatics}},
	url = {http://doi.acm.org/10.1145/2998181.2998362},
	doi = {10.1145/2998181.2998362},
	abstract = {In families composed of parents and children, the health of parents and children is often interrelated: the health of children can have an impact on the health of parents, and vice versa. However, the design of health tracking technologies typically focuses on individual self-tracking and self-management, not yet addressing family health in a unified way. To examine opportunities for family-centered health informatics, we interviewed 14 typically healthy families, interviewed 10 families with a child with a chronic condition, and conducted three participatory design sessions with children aged 7 to 11. Although we identified similarities between family-centered tracking and personal self-tracking, we also found families want to: (1) identify ripple effects between family members; (2) consider both caregivers and children as trackers to support distributing the burdens of tracking across family members; and (3) identify and pursue health guidelines that consider the state of their family (e.g., specific health guidelines for families that include a child with a chronic condition). We contribute to expanding the design lens from self-tracking to family-centered health tracking.},
	booktitle = {Proceedings of the 2017 {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} and {Social} {Computing}},
	publisher = {ACM},
	author = {Pina, Laura R. and Sien, Sang-Wha and Ward, Teresa and Yip, Jason C. and Munson, Sean A. and Fogarty, James and Kientz, Julie A.},
	year = {2017},
	keywords = {personal informatics, self-monitoring, self-tracking, children., family informatics, health, families},
	pages = {2300--2315}
}

@book{kumaraguru_privacy_2005,
	title = {Privacy indexes: a survey of {Westin}'s studies},
	publisher = {Carnegie Mellon University, School of Computer Science, Institute for …},
	author = {Kumaraguru, Ponnurangam and Cranor, Lorrie Faith},
	year = {2005}
}

@book{norman2013design,
  title={The design of everyday things: Revised and expanded edition},
  author={Norman, Don},
  year={2013},
  publisher={Basic books}
}

%@manual{noauthor_about_chronic_diseases_2020,
%	title = {About {Chronic} {Diseases} {\textbar} {CDC}},
%	url = {https://www.cdc.gov/chronicdisease/about/index.htm},
%	abstract = {Learn more about common chronic diseases and their risk factors.},
%	language = {en-us},
%	urldate = {2020-11-12},
%	note = {Publisher: Centers for Disease Control and Prevention},
%	month = oct,
%	year = {2020}
%}

@online{cdc_about_chronic_diseases_2020,
  author = {{Centers for Disease Control and Prevention}},
  title = {About {Chronic} {Diseases} {\textbar} {CDC}},
  url = {https://www.cdc.gov/chronicdisease/about/index.htm},
  lastaccessed ={November 12, 2020},
  year = {2020}
}

%@manual{noauthor_who_chronice_disease_nodate,
%	title = {{WHO} {\textbar} {Integrated} chronic disease prevention and control},
%	url = {https://www.who.int/chp/about/integrated_cd/en/},
%	urldate = {2020-11-12},
%	journal = {WHO},
%	note = {Publisher: World Health Organization},
%	year = {2020}
%}

@online{who_who_chronice_disease_2020,
  author = {{World Health Organization}},
  title = {{WHO} {\textbar} {Integrated} chronic disease prevention and control},
  url = {https://www.who.int/chp/about/integrated_cd/en/},
  lastaccessed ={November 12, 2020},
  year = {2020}
}

@online{mozilla_api_2022,
    author = {Mozilla and individual contributors},
	title = {{API} - {MDN} {Web} {Docs} {Glossary}: {Definitions} of {Web}-related terms {\textbar} {MDN}},
	url = {https://developer.mozilla.org/en-US/docs/Glossary/API},
	lastaccessed ={January 18, 2022},
	year = {2022},
	shorttitle = {{API} - {MDN} {Web} {Docs} {Glossary}},
	abstract = {An API (Application Programming Interface) is a set of features and rules that exist inside a software program (the application) enabling interaction with it through software - as opposed to a human user interface. The API can be seen as a simple contract (the interface) between the application offering it and other items, such as third party software or hardware.},
	language = {en-US},
	urldate = {2022-01-18}
}


@online{mozilla_javascript_2022,
    author = {Mozilla and individual contributors},
	title = {{JavaScript} {\textbar} {MDN}},
	url = {https://developer.mozilla.org/en-US/docs/Web/JavaScript},
	lastaccessed ={January 18, 2022},
	year = {2022},
	abstract = {JavaScript (JS) is a lightweight, interpreted, or just-in-time compiled programming language with first-class functions. While it is most well-known as the scripting language for Web pages, many non-browser environments also use it, such as Node.js, Apache CouchDB and Adobe Acrobat. JavaScript is a prototype-based, multi-paradigm, single-threaded, dynamic language, supporting object-oriented, imperative, and declarative (e.g. functional programming) styles. Read more about JavaScript.},
	language = {en-US},
	urldate = {2022-01-18},
}

@online{mozilla_html_2022,
    author = {Mozilla and individual contributors},
	title = {{HTML}: {HyperText} {Markup} {Language} {\textbar} {MDN}},
	url = {https://developer.mozilla.org/en-US/docs/Web/HTML},
	lastaccessed ={January 18, 2022},
	year = {2022},
	shorttitle = {{HTML}},
	abstract = {HTML (HyperText Markup Language) is the most basic building block of the Web. It defines the meaning and structure of web content. Other technologies besides HTML are generally used to describe a web page's appearance/presentation (CSS) or functionality/behavior (JavaScript).},
	language = {en-US},
	urldate = {2022-01-18}
}

@online{mozilla_css_2022,
    author = {Mozilla and individual contributors},
	title = {{CSS}: {Cascading} {Style} {Sheets} {\textbar} {MDN}},
	url = {https://developer.mozilla.org/en-US/docs/Web/CSS},
	lastaccessed ={January 18, 2022},
	year = {2022},
	shorttitle = {{CSS}},
	abstract = {Cascading Style Sheets (CSS) is a stylesheet language used to describe the presentation of a document written in HTML or XML (including XML dialects such as SVG, MathML or XHTML). CSS describes how elements should be rendered on screen, on paper, in speech, or on other media.},
	language = {en-US},
	urldate = {2022-01-18}
}

@online{mozilla_json_2022,
    author = {Mozilla and individual contributors},
	title = {{JSON} - {JavaScript} {\textbar} {MDN}},
	url = {https://developer.mozilla.org/en-US/docs/Web/JavaScript/Reference/Global_Objects/JSON},
	lastaccessed ={January 18, 2022},
	year = {2022},
	abstract = {The JSON object contains methods for parsing JavaScript Object Notation (JSON) and converting values to JSON. It can't be called or constructed, and aside from its two method properties, it has no interesting functionality of its own.},
	language = {en-US},
	urldate = {2022-01-18}
}

@online{mozilla_crud_2022,
    author = {Mozilla and individual contributors},
	title = {{CRUD} - {MDN} {Web} {Docs} {Glossary}: {Definitions} of {Web}-related terms {\textbar} {MDN}},
	url = {https://developer.mozilla.org/en-US/docs/Glossary/CRUD},
	lastaccessed ={January 18, 2022},
	year = {2022},
	
	shorttitle = {{CRUD} - {MDN} {Web} {Docs} {Glossary}},
	
	abstract = {CRUD (Create, Read, Update, Delete) is an acronym for ways one can operate on stored data. It is a mnemonic for the four basic functions of persistent storage. CRUD typically refers to operations performed in a database or datastore, but it can also apply to higher level functions of an application such as soft deletes where data is not actually deleted but marked as deleted via a status.},
	language = {en-US},
	urldate = {2022-01-18}
}


@online{mongodb_inc_mongodb_2022,
    author = {{MongoDB, Inc.}},
	title = {{MongoDB}: the application data platform},
	shorttitle = {{MongoDB}},
	url = {https://www.mongodb.com},
	lastaccessed ={January 18, 2022},
	year = {2022},
	abstract = {Get your ideas to market faster with an application data platform built on the leading modern database. MongoDB makes working with data easy.},
	language = {en-us},
	urldate = {2022-01-18}
}


@online{facebook_react_2022,
    author = {Facebook, Inc. and individual contributors},
	title = {React},
	copyright = {MIT},
	url = {https://github.com/facebook/react},
	abstract = {A declarative, efficient, and flexible JavaScript library for building user interfaces.},
	urldate = {2022-01-18},
	publisher = {Meta},
	month = jan,
	year = {2022},
	note = {original-date: 2013-05-24T16:15:54Z},
	keywords = {declarative, frontend, javascript, library, react, ui},
}

@online{abramov_reduxjsredux_2022,
	title = {reduxjs/redux},
	url = {https://github.com/reduxjs/redux},
	abstract = {Predictable state container for JavaScript apps},
	urldate = {2022-01-18},
	publisher = {Redux},
	author = {Abramov, Dan and individual contributors},
	month = jan,
	year = {2022},
	note = {original-date: 2015-05-29T23:53:15Z},
	keywords = {redux},
}

@online{zabriskie_contributors_axios_2022,
	title = {axios},
	copyright = {MIT},
	url = {https://github.com/axios/axios},
	abstract = {Promise based HTTP client for the browser and node.js},
	urldate = {2022-01-18},
	publisher = {axios},
	author = {Zabriskie, Matt and individual contributors},
	month = jan,
	year = {2022},
	note = {original-date: 2014-08-18T22:30:27Z},
	keywords = {hacktoberfest, http-client, javascript, nodejs, promise},
}

@online{sideway_inc_hapihapi_2022,
	title = {@hapi/hapi},
	url = {https://github.com/hapijs/hapi},
	abstract = {The Simple, Secure Framework Developers Trust},
	urldate = {2022-01-18},
	publisher = {hapi.js},
	author = {{Sideway Inc} and {project contributors}},
	month = jan,
	year = {2022},
	note = {original-date: 2011-08-06T00:35:39Z},
	keywords = {application, framework, hapi, http, nodejs},
}

@online{nodejs_contributors_nodejs_2022,
	title = {Node.js},
	url = {https://github.com/nodejs/node},
	abstract = {Node.js JavaScript runtime},
	urldate = {2022-01-18},
	publisher = {Node.js},
	author = {{Node.js contributors}},
	month = jan,
	year = {2022},
	note = {original-date: 2014-11-26T19:57:11Z},
	keywords = {javascript, js, linux, macos, mit, node, nodejs, runtime, windows},
}

@inproceedings{klasnja_how_2011,
	address = {New York, NY, USA},
	series = {{CHI} '11},
	title = {How to evaluate technologies for health behavior change in {HCI} research},
	isbn = {978-1-4503-0228-9},
	url = {http://doi.acm.org/10.1145/1978942.1979396},
	doi = {10.1145/1978942.1979396},
	abstract = {New technologies for encouraging physical activity, healthy diet, and other types of health behavior change now frequently appear in the HCI literature. Yet, how such technologies should be evaluated within the context of HCI research remains unclear. In this paper, we argue that the obvious answer to this question - that evaluations should assess whether a technology brought about the intended change in behavior - is too limited. We propose that demonstrating behavior change is often infeasible as well as unnecessary for a meaningful contribution to HCI research, especially when in the early stages of design or when evaluating novel technologies. As an alternative, we suggest that HCI contributions should focus on efficacy evaluations that are tailored to the specific behavior-change intervention strategies (e.g., self-monitoring, conditioning) embodied in the system and studies that help gain a deep understanding of people's experiences with the technology.},
	urldate = {2013-01-04},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Klasnja, Predrag and Consolvo, Sunny and Pratt, Wanda},
	year = {2011},
	keywords = {behavior change, evaluation methods, user studies, health informatics},
	pages = {3063--3072}
}

@inproceedings{klasnja_toward_2017,
	address = {Denver, Colorado, USA},
	series = {{CHI} '17},
	title = {Toward {Usable} {Evidence}: {Optimizing} {Knowledge} {Accumulation} in {HCI} {Research} on {Health} {Behavior} {Change}},
	isbn = {978-1-4503-4655-9},
	shorttitle = {Toward {Usable} {Evidence}},
	url = {https://doi.org/10.1145/3025453.3026013},
	doi = {10.1145/3025453.3026013},
	abstract = {Over the last ten years, HCI researchers have introduced a range of novel ways to support health behavior change, from glanceable displays to sophisticated game dynamics. Yet, this research has not had as much impact as its originality warrants. A key reason for this is that common forms of evaluation used in HCI make it difficult to effectively accumulate-and use-knowledge across research projects. This paper proposes a strategy for HCI research on behavior change that retains the field's focus on novel technical contributions while enabling accumulation of evidence that can increase impact of individual research projects both in HCI and the broader behavior-change science. The core of this strategy is an emphasis on the discovery of causal effects of individual components of behavior-change technologies and the precise ways in which those effects vary with individual differences, design choices, and contexts in which those technologies are used.},
	urldate = {2020-07-31},
	booktitle = {Proceedings of the 2017 {CHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {Association for Computing Machinery},
	author = {Klasnja, Predrag and Hekler, Eric B. and Korinek, Elizabeth V. and Harlow, John and Mishra, Sonali R.},
	month = may,
	year = {2017},
	keywords = {behavior change, evaluation methods, user studies, health informatics},
	pages = {3071--3082}
}


@inproceedings{barbarin_taking_2015,
	address = {New York, NY, USA},
	series = {{CSCW} '15},
	title = {Taking {Our} {Time}: {Chronic} {Illness} and {Time}-{Based} {Objects} in {Families}},
	isbn = {978-1-4503-2922-4},
	shorttitle = {Taking {Our} {Time}},
	url = {http://doi.acm.org/10.1145/2675133.2675200},
	doi = {10.1145/2675133.2675200},
	abstract = {This study examined the use of time-based objects by patients and their families to manage chronic illnesses at home. Calendar systems and medication containers, the main types of time-based objects studied, were used as part of two family-based collaborative work practices: 1) prompting health management activities, and 2) safeguarding these activities. Additionally, these artifacts were part of two social interaction patterns that managed emotional intimacy: 1) expressing support, and 2) hiding and disguising illness. Accordingly, home-based illness management may be more collaborative than previously recognized. Moreover, through their interactive incorporation into family life, time-based objects are laden with psychosocial significance. Breakdowns in temporal support were also evident, and were accompanied by: missed medication events; rationing of medications; medication errors; and difficulties with preparation for medical appointments. We propose novel artifact designs to better support patients and their families in managing the temporal aspects of chronic illness together.},
	urldate = {2017-03-31},
	booktitle = {Proceedings of the 18th {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} \& {Social} {Computing}},
	publisher = {ACM},
	author = {Barbarin, Andrea and Veinot, Tiffany C. and Klasnja, Predrag},
	year = {2015},
	keywords = {calendars, medication, qualitative, patient portals, pill boxes, visual methods, families, health informatics},
	pages = {288--301}
}

@book{clarke_situational_2005,
	address = {Thousand Oaks, CA},
	title = {Situational {Analysis}: {Grounded} {Theory} {After} the {Postmodern} {Turn}},
	isbn = {978-0-7619-3056-3},
	shorttitle = {Situational {Analysis}},
	abstract = {This book provides a detailed and comprehensive introduction to situational analysis of qualitative data. Adele E Clarke personally created the situational analysis approach, no other book currently deals with it. She carefully situates herself and the situational analysis approach vis-à-vis other current approaches to grounded theory (specifically) and to qualitative data analysis (more generally). Situational analysis is unique in that it both uses and extends grounded theory; it employs established coding and memoing strategies, while extending the method to include three new kinds of maps and analyses of the situation focused upon in one's research. This is also the first publication about using grounded theory with historical, visual, and discursive materials.},
	
	publisher = {SAGE Publications},
	author = {Clarke, Adele},
	month = mar,
	year = {2005},
	keywords = {Social Science / Methodology, Social Science / Research}
}

@inproceedings{tixier2009translating,
  title={Translating social support practices into online services for family caregivers},
  author={Tixier, Matthieu and Gaglio, G{\'e}rald and Lewkowicz, Myriam},
  booktitle={Proceedings of the ACM 2009 international conference on Supporting group work},
  pages={71--80},
  year={2009}
}

@inproceedings{tixier2016counting,
  title={"Counting on the Group" Reconciling Online and Offline Social Support among Older Informal Caregivers},
  author={Tixier, Matthieu and Lewkowicz, Myriam},
  booktitle={Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems},
  pages={3545--3558},
  year={2016}
}


@inproceedings{skeels_catalyzing_2010,
	address = {New York, NY, USA},
	series = {{CHI} '10},
	title = {Catalyzing {Social} {Support} for {Breast} {Cancer} {Patients}},
	isbn = {978-1-60558-929-9},
	url = {http://doi.acm.org/10.1145/1753326.1753353},
	doi = {10.1145/1753326.1753353},
	abstract = {Social support is a critical, yet underutilized resource when undergoing cancer care. Underutilization occurs in two conditions: (a) when patients fail to seek out information, material assistance, and emotional support from family and friends or (b) when family and friends fail to meet the individualized needs and preferences of patients. Social networks are most effective when kept up to date on the patient's status, yet updating everyone takes effort that patients cannot always put in. To improve this situation, we describe the results of our participatory design activities with breast cancer patients. During this process, we uncovered the information a social network needs to stay informed as well as a host of barriers to social support that technology could help break down. Our resulting prototype, built using Facebook Connect, includes explicit features to reduce these barriers and thus, promote the healthy outcomes associated with strong social support.},
	urldate = {2015-10-14},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Skeels, Meredith M. and Unruh, Kenton T. and Powell, Christopher and Pratt, Wanda},
	year = {2010},
	keywords = {health consumers, participatory design, social network},
	pages = {173--182}
}


@article{valdez_exploring_2015,
	title = {Exploring patients’ health information communication practices with social network members as a foundation for consumer health {IT} design},
	volume = {84},
	issn = {1386-5056},
	url = {https://www.sciencedirect.com/science/article/pii/S1386505615000301},
	doi = {10.1016/j.ijmedinf.2015.01.014},
	abstract = {Background
There is a need to ensure that the growing number of consumer health information technologies designed to support patient engagement account for the larger social context in which health is managed. Basic research on how patients engage this larger social context is needed as a precursor to the development of patient-centered consumer health information technology (IT) solutions.
Purpose
The purpose of this study was to inform the broader design of consumer health IT by characterizing patients’ existing health information communication practices with their social network members.
Methods
This qualitative study took place between 2010 and 2012 in a Midwestern city. Eighteen patients with chronic conditions participated in a semi-structured interview that was analyzed using qualitative content analysis and descriptive statistics. Emphasis was placed on recruiting a sample representing diverse cultural groups and including participants of low socioeconomic status.
Results
Participants’ social networks included a wide range of individuals, spanning biological relatives, divinities, and second-degree relationships. Participants’ rationales for health information communication reflected seven themes: (1) characteristics and circumstances of the person, (2) characteristics and circumstances of the relationship, (3) structure and composition of the social network, (4) content of the message, (5) orientation of the goal, (6) dimensions of the context, and (7) adaptive practices.
Conclusions
This study demonstrates that patients’ health information communication practices are multidimensional, engaging individuals beyond formal and informal caregivers and driven by characteristics of their personal lives and larger social contexts in addition to their health problem. New models of consumer health IT must be created to better align with the realities of patients’ communication routines.},
	
	number = {5},
	urldate = {2021-05-26},
	journal = {International Journal of Medical Informatics},
	author = {Valdez, Rupa Sheth and Brennan, Patricia Flatley},
	month = may,
	year = {2015},
	keywords = {Engineering design, Qualitative research, Social network, Consumer health IT, Health information communication, Patient engagement},
	pages = {363--374}
}


@article{valdez_loquacious_2017,
	title = {From loquacious to reticent: understanding patient health information communication to guide consumer health {IT} design},
	volume = {24},
	issn = {1067-5027},
	shorttitle = {From loquacious to reticent},
	url = {https://doi.org/10.1093/jamia/ocw155},
	doi = {10.1093/jamia/ocw155},
	abstract = {Background and significance. It is increasingly recognized that some patients self-manage in the context of social networks rather than alone. Consumer health information technology (IT) designed to support socially embedded self-management must be responsive to patients’ everyday communication practices. There is an opportunity to improve consumer health IT design by explicating how patients currently leverage social media to support health information communication.Objective. The objective of this study was to determine types of health information communication patterns that typify Facebook users with chronic health conditions to guide consumer health IT design.Materials and methods. Seven hundred participants with type 2 diabetes were recruited through a commercial survey access panel. Cluster analysis was used to identify distinct approaches to health information communication both on and off Facebook. Analysis of variance (ANOVA) methods were used to identify demographic and behavioral differences among profiles. Secondary analysis of qualitative interviews (n = 25) and analysis of open-ended survey questions were conducted to understand participant rationales for each profile.Results. Our analysis yielded 7 distinct health information communication profiles. Five of 7 profiles had consistent patterns both on and off Facebook, while the remaining 2 demonstrated distinct practices, with no health information communication on Facebook but some off Facebook. One profile was distinct from all others in both health information communication practices and demographic composition. Rationales for following specific health information communication practices were categorized under 6 themes: altruism, instrumental support, social support, privacy and stigma, convenience, and Facebook knowledge.Conclusion. Facebook has been widely adopted for health information communication; This study demonstrates that Facebook has been widely adopted for health information communication. It also shows that the ways in which patients communicate health information on and off Facebook are diverse.},
	number = {4},
	urldate = {2021-05-26},
	journal = {Journal of the American Medical Informatics Association},
	author = {Valdez, Rupa S and Guterbock, Thomas M and Fitzgibbon, Kara and Williams, Ishan C and Wellbeloved-Stone, Claire A and Bears, Jaime E and Menefee, Hannah K},
	month = jul,
	year = {2017},
	pages = {680--696}
}


@inproceedings{druin_cooperative_1999,
	address = {New York, NY, USA},
	series = {{CHI} '99},
	title = {Cooperative inquiry: developing new technologies for children with children},
	isbn = {978-0-201-48559-2},
	shorttitle = {Cooperative inquiry},
	url = {https://doi.org/10.1145/302979.303166},
	doi = {10.1145/302979.303166},
	abstract = {In todays homes and schools, children are emerging as frequent and experienced users of technology [3, 14]. As this trend continues, it becomes increasingly important to ask if we are fulfilling the technology needs of our children. To answer this question, I have developed a research approach that enables young children to have a voice throughout the technology development process. In this paper, the techniques of cooperative inquiry will be described along with a theoretical framework that situates this work in the HCI literature. Two examples of technology resulting from this approach will be presented, along with a brief discussion on the design-centered learning of team researchers using cooperative inquiry.},
	urldate = {2021-05-27},
	booktitle = {Proceedings of the {SIGCHI} conference on {Human} {Factors} in {Computing} {Systems}},
	publisher = {Association for Computing Machinery},
	author = {Druin, Allison},
	month = may,
	year = {1999},
	keywords = {cooperative inquiry, design techniques, participatory design, children, cooperative design, educational applications, intergenerational design team, KidPad, PETS},
	pages = {592--599}
}


@inproceedings{garzotto_broadening_2008,
	address = {New York, NY, USA},
	series = {{IDC} '08},
	title = {Broadening children's involvement as design partners: from technology to "experience"},
	isbn = {978-1-59593-994-4},
	shorttitle = {Broadening children's involvement as design partners},
	url = {https://doi.org/10.1145/1463689.1463755},
	doi = {10.1145/1463689.1463755},
	abstract = {Many existing studies discuss the participation of children as design partners in the development of technology. In this paper, we shift the focus from technology to experience, and propose to broaden the role of children to become experience designer partners. We exemplify our approach by discussing a case study in the educational domain. We conducted a contextual inquiry study in a local primary school for over three months, working with twenty four children aged 10--11 who used an online tool for cooperative hyperstorytelling. Our research shows that children of this age can participate in experience design not only as informants but also as co-designers. This intergenerational partnership brings a number of educational benefits to children involved in this process. It also suggests innovative solutions in the way technology can be exploited in an educational setting.},
	urldate = {2021-05-27},
	booktitle = {Proceedings of the 7th international conference on {Interaction} design and children},
	publisher = {Association for Computing Machinery},
	author = {Garzotto, Franca},
	month = jun,
	year = {2008},
	keywords = {contextual inquiry, e-learning, hypermedia, storytelling, children, intergenerational design team},
	pages = {186--193}
}


@book{cooper_about_2012,
	title = {About {Face} 3: {The} {Essentials} of {Interaction} {Design}},
	isbn = {978-1-118-07915-7},
	shorttitle = {About {Face} 3},
	abstract = {This completely updated volume presents the effective and practical tools you need to design great desktop applications, Web 2.0 sites, and mobile devices. You’ll learn the principles of good product behavior and gain an understanding of Cooper’s Goal-Directed Design method, which involves everything from conducting user research to defining your product using personas and scenarios. Ultimately, you’ll acquire the knowledge to design the best possible digital products and services.},
	
	publisher = {John Wiley \& Sons},
	author = {Cooper, Alan and Reimann, Robert and Cronin, David},
	month = jun,
	year = {2012},
	note = {Google-Books-ID: e75G0xIJju8C},
	keywords = {Computers / Programming / General, Computers / User Interfaces}
}


@book{kuniavsky_observing_2003,
	title = {Observing the {User} {Experience}: {A} {Practitioner}'s {Guide} to {User} {Research}},
	isbn = {978-1-55860-923-5},
	shorttitle = {Observing the {User} {Experience}},
	abstract = {Wow! So many of the user experience research methods we have refined and used over the years are now organized and described in detail in one book.--Christian Rohrer, Manager, User Experience Research, Yahoo!I love Observing the User Experience! This comprehensive guide approaches user experience research like never before, and is well-written, easy-to-read, and quite user friendly. It provides a real-world example of how research is done in just enough detail that it can both inform a CEO of the role of usability research as well as introduce methodology to someone starting out in the field. Bravo! --Kelly Braun, Usability Manager, Ebay The gap between who designers and developers imagine their users are, and who those users really are can be the biggest problem with product development. Observing the User Experience will help you bridge that gap to understand what your users want and need from your product, and whether they'll be able to use what you've created.Filled with real-world experience and a wealth of practical information, this book presents a complete toolbox of techniques to help designers and developers see through the eyes of their users. It provides in-depth coverage of 13 user experience research techniques that will provide a basis for developing better products, whether they're Web, software or mobile based. In addition, it's written with an understanding of how software is developed in the real world, taking tight budgets, short schedules, and existing processes into account.Features and benefits:·Explains how to create usable products that are still original, creative, and unique·A valuable resource for designers, developers, project managers-anyone in a position where their work comes in direct contact with the end user.·Provides a real-world perspective on research and provides advice about how user research can be done cheaply, quickly and how results can be presented persuasively·Gives readers the tools and confidence to perform user research on their own designs and tune their software user experience to the unique needs of their product and its users},
	
	publisher = {Morgan Kaufmann},
	author = {Kuniavsky, Mike},
	month = apr,
	year = {2003},
	note = {Google-Books-ID: jIrl2L\_JvZoC},
	keywords = {Computers / Reference, Computers / User Interfaces}
}


@book{rubin_handbook_2008,
	title = {Handbook of {Usability} {Testing}: {How} to {Plan}, {Design}, and {Conduct} {Effective} {Tests}},
	isbn = {978-0-470-38608-8},
	shorttitle = {Handbook of {Usability} {Testing}},
	abstract = {Whether it?s software, a cell phone, or a refrigerator, your customer wants?no, expects?your product to be easy to use. This fully revised handbook provides clear, step-by-step guidelines to help you test your product for usability. Completely updated with current industry best practices, it can give you that all-important marketplace advantage: products that perform the way users expect. You?ll learn to recognize factors that limit usability, decide where testing should occur, set up a test plan to assess goals for your product?s usability, and more.},
	
	publisher = {John Wiley \& Sons},
	author = {Rubin, Jeffrey and Chisnell, Dana},
	month = aug,
	year = {2008},
	keywords = {Computers / Programming / General, Computers / User Interfaces}
}


@article{demiris_patient-centered_2008,
	title = {Patient-centered {Applications}: {Use} of {Information} {Technology} to {Promote} {Disease} {Management} and {Wellness}. {A} {White} {Paper} by the {AMIA} {Knowledge} in {Motion} {Working} {Group}},
	volume = {15},
	issn = {1067-5027},
	shorttitle = {Patient-centered {Applications}},
	url = {https://doi.org/10.1197/jamia.M2492},
	doi = {10.1197/jamia.M2492},
	number = {1},
	urldate = {2021-06-06},
	journal = {Journal of the American Medical Informatics Association},
	author = {Demiris, George and Afrin, Lawrence B. and Speedie, Stuart and Courtney, Karen L. and Sondhi, Manu and Vimarlund, Vivian and Lovis, Christian and Goossen, William and Lynch, Cecil},
	month = jan,
	year = {2008},
	pages = {8--13}
}


@inproceedings{bevan_iso_2015,
	address = {Cham},
	series = {Lecture {Notes} in {Computer} {Science}},
	title = {{ISO} 9241-11 {Revised}: {What} {Have} {We} {Learnt} {About} {Usability} {Since} 1998?},
	isbn = {978-3-319-20901-2},
	shorttitle = {{ISO} 9241-11 {Revised}},
	doi = {10.1007/978-3-319-20901-2_13},
	abstract = {A revision is currently being undertaken of ISO 9241-11, published in 1998 to provide guidance on usability. ISO-9241-11 defines usability in terms of effectiveness, efficiency and satisfaction in a particular context of use. The intention was to emphasise that usability is an outcome of interaction rather than a property of a product. This is now widely accepted. However, the standard also places emphasis on usability measurement and it is now appreciated that there is more to usability evaluation than measurement. Other developments include an increasing awareness of the importance of the individual user’s emotional experience as discretionary usage of complex consumer products and use of the World Wide Web have became more widespread. From an organisational perspective, it is now appreciated that usability plays an important role in managing the potentials risks that can arise from inappropriate outcomes of interaction. The revision of ISO 9241-11 takes account of these issues and other feedback.},
	booktitle = {Human-{Computer} {Interaction}: {Design} and {Evaluation}},
	publisher = {Springer International Publishing},
	author = {Bevan, Nigel and Carter, James and Harker, Susan},
	editor = {Kurosu, Masaaki},
	year = {2015},
	keywords = {Standards, Usability, User experience},
	pages = {143--151}
}


@book{strauss_continual_2008,
	title = {Continual {Permutations} of {Action}},
	isbn = {978-0-202-36245-8},
	abstract = {Richard Bernstein expressed the view that pragmatism was ahead of its time; the same has been true of symbolic interactionism. These two closely related perspectives, one philosophical and the other sociological, place human action at the center of their explanatory schemes. It has not mattered what aspect of social or psychological behavior was under scrutiny. Whether selves, minds, or emotions, or institutions, social structures, or social change, all have been conceptualized as forms of human activity. This view is the simple genius of these perspectives. Anselm Strauss always took ideas pertaining to action and process seriously. Here he makes explicit the theory of action that implicitly guided his research for roughly forty years. It is understood that Strauss accepts the proposition that acting (or even better, interacting) causes social structure. He lays the basis for this idea in the nineteen assumptions he articulates early in the book--assumptions that elaborate and make clearer Herbert Blumer's famous premises of symbolic interactionism. The task Strauss put before himself is how to keep the complexity of human group life in front of the researcher/theorist and simultaneously articulate an analytical scheme that clarifies and reveals that complexity. With these two imperfectly related issues before him, Strauss outlines an analytical scheme of society in action. It is a scheme that rests not on logical necessity but on research and observation, and the concepts he uses are proposed because they do a certain amount of analytical work. One would be well advised to take Continual Permutations of Action very seriously. Anselm L. Strauss (1916-1996) was professor of sociology and chair of the Department of Social and Behavioral Sciences at the University of California, San Francisco. His many books include Creating Sociological Awareness, Images of the American City, and Professions, Work, and Careers all available from Transaction. David R. Maines is professor and chair of sociology and anthropology at Oakland University. He was one of the founding members of the Society for the Study of Symbolic Interaction and has been a recipient of the SSSI George Herbert Mead Award for lifetime contributions to scholarship.},
	publisher = {AldineTransaction},
	author = {Strauss, Anselm Leonard},
	year = {2008},
	keywords = {Social Science / Sociology / General}
}


@inproceedings{kaziunas_caring_2017,
	address = {New York, NY, USA},
	series = {{CSCW} '17},
	title = {Caring {Through} {Data}: {Attending} to the {Social} and {Emotional} {Experiences} of {Health} {Datafication}},
	isbn = {978-1-4503-4335-0},
	shorttitle = {Caring {Through} {Data}},
	url = {http://doi.acm.org/10.1145/2998181.2998303},
	doi = {10.1145/2998181.2998303},
	urldate = {2017-12-18},
	booktitle = {Proceedings of the 2017 {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work} and {Social} {Computing}},
	publisher = {ACM},
	author = {Kaziunas, Elizabeth and Ackerman, Mark S. and Lindtner, Silvia and Lee, Joyce M.},
	year = {2017},
	keywords = {caregiving, chronic illness management, diabetes, diy health, emotion work, health and wellness, healthcare technology, personal data, personal health informatics, remote monitoring, self-tracking},
	pages = {2260--2272}
}


@article{valdez_transforming_2015,
	title = {Transforming consumer health informatics through a patient work framework: connecting patients to context},
	volume = {22},
	issn = {1067-5027},
	shorttitle = {Transforming consumer health informatics through a patient work framework},
	url = {https://academic.oup.com/jamia/article/22/1/2/833190/Transforming-consumer-health-informatics-through-a},
	doi = {10.1136/amiajnl-2014-002826},
	number = {1},
	urldate = {2017-06-09},
	journal = {Journal of the American Medical Informatics Association},
	author = {Valdez, Rupa S. and Holden, Richard J. and Novak, Laurie L. and Veinot, Tiffany C.},
	month = jan,
	year = {2015},
	pages = {2--10}
}

@misc{scientific_atlasti_2020,
    author = {{Scientific Software Development GmbH}},
	title = {{ATLAS}.ti: {The} {Qualitative} {Data} {Analysis} \& {Research} {Software}},
	url = {https://atlasti.com/},
	lastaccessed ={November 12, 2020},
	year = {2020}
}


@article{klasnja_supporting_2011,
	title = {Supporting cancer patients’ unanchored health information management with mobile technology},
	volume = {2011},
	issn = {1942-597X},
	url = {https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3243297/},
	abstract = {Cancer patients often need to manage care-related information when they are away from home, when they are experiencing pain or treatment side effects, or when their abilities to deal with information effectively are otherwise impaired. In this paper, we describe the results from a four-week evaluation of HealthWeaver Mobile, a mobile phone application that we developed to support such “unanchored” patient information activities. Based on experiences from nine cancer patients, our results indicate that HealthWeaver Mobile can help patients to access care-related information from anywhere, to capture information whenever a need arises, and to share information with clinicians during clinic visits. The enhanced ability to manage information, in turn, helps patients to manage their care and to feel more confident in their ability to stay in control of their information and their health.},
	urldate = {2018-06-21},
	journal = {AMIA Annual Symposium Proceedings},
	author = {Klasnja, Predrag and Hartzler, Andrea and Powell, Christopher and Pratt, Wanda},
	year = {2011},
	pmid = {22195130},
	pmcid = {PMC3243297},
	pages = {732--741}
}


@inproceedings{civan_locating_2009,
	address = {New York, NY, USA},
	series = {{GROUP} '09},
	title = {Locating {Patient} {Expertise} in {Everyday} {Life}},
	isbn = {978-1-60558-500-0},
	url = {http://doi.acm.org/10.1145/1531674.1531718},
	doi = {10.1145/1531674.1531718},
	abstract = {Coping with a new health issue often requires individuals to acquire knowledge and skills to manage personal health. Many patients turn to one another for experiential expertise outside the formal bounds of the health-care system. Internet-based social software can facilitate expertise sharing among patients, but provides only limited ways for users to locate sources of patient expertise. Although much prior research has investigated expertise location and systems to augment expertise sharing in workplace organizations, the transferability of this knowledge to other contexts, such as personal health, is unclear. Guided by expertise locating frameworks drawn from prior work, we conducted a field study to investigate expertise locating in the informal and everyday context of women diagnosed with breast cancer. Similarities between patients' expertise locating practices and practices of professionals in workplace organizations suggest similar support strategies could apply in both contexts. However, unlike professionals, unsolicited advice often triggered patients to locate expertise. They identified expertise through various forms of gatekeeping. The high-stakes nature of problems patients faced also led them to use triangulation strategies in anticipation of breakdowns in expertise location. Based on these key differences, we explored five design additions to social software that could support patients in their critical need to locate patient expertise.},
	urldate = {2018-09-15},
	booktitle = {Proceedings of the {ACM} 2009 {International} {Conference} on {Supporting} {Group} {Work}},
	publisher = {ACM},
	author = {Civan, Andrea and McDonald, David W. and Unruh, Kenton T. and Pratt, Wanda},
	year = {2009},
	keywords = {patient expertise, expertise location, expertise sharing},
	pages = {291--300}
}


@article{feng_empathy_2004,
	title = {Empathy and online interpersonal trust: {A} fragile relationship},
	volume = {23},
	issn = {0144-929X},
	shorttitle = {Empathy and online interpersonal trust},
	url = {https://doi.org/10.1080/01449290310001659240},
	doi = {10.1080/01449290310001659240},
	abstract = {The rapid growth of personal email communication, instant messaging and online communities has brought attention to the important role of interpersonal trust in online communication. An empirical study was conducted focusing on the effect of empathy on online interpersonal trust in textual IM. To be more specific, the relationship between empathic accuracy, response type and online interpersonal trust was investigated. The result suggests both empathic accuracy and response type have significant influence on online interpersonal trust. The interaction between empathic accuracy and response type also significantly influences online trust. Interestingly, the results imply a relationship between daily trust attitude and online interpersonal trust. People who are more trusting in their daily life may experience more difficulty in developing trust online. There is also some evidence to suggest that different communication scenarios may have an influence on online trust.},
	number = {2},
	urldate = {2021-06-14},
	journal = {Behaviour \& Information Technology},
	author = {Feng, Jinjuan and Lazar, Jonathan and Preece, Jenny},
	month = mar,
	year = {2004},
	note = {Publisher: Taylor \& Francis
\_eprint: https://doi.org/10.1080/01449290310001659240},
	pages = {97--106}
}


@article{hogan_information_2005,
	title = {“{Information} work” and chronic illness: {Interpreting} results from a nationwide survey of people living with {HIV}/{AIDS}},
	volume = {42},
	copyright = {Copyright © by American Society for Information Science and Technology},
	issn = {1550-8390},
	shorttitle = {“{Information} work” and chronic illness},
	url = {https://asistdl.onlinelibrary.wiley.com/doi/abs/10.1002/meet.14504201150},
	doi = {10.1002/meet.14504201150},
	abstract = {While there is a substantial body of research which describes how the HIV-positive community seeks and uses information, much of that work fails to consider these activities in relationship to the experience of living with long-term chronic illnesses. In this paper, we present results from our survey study on the information preferences and practices of the HIV-positive community. We compare our results to previous findings on the HIV-positive community and people living with another chronic condition, multiple sclerosis (MS). Applying the chronic illness trajectory model developed by Juliet Corbin and Anselm Strauss, we examine what this body of research tells us about the management of “information work.” We identify the information sources that are most important, the attributes of information that influence its use, and the tensions inherent in managing information in the day-to-day lives of the chronically ill. By extending Corbin and Strauss's model to the aspects of information emphasized across studies, we begin to articulate the fundamental nature of information work in living with chronic illnesses and how information services can be more responsive to the needs of the chronically ill.},
	number = {1},
	urldate = {2021-06-14},
	journal = {Proceedings of the American Society for Information Science and Technology},
	author = {Hogan, Timothy P. and Palmer, Carole L.},
	year = {2005},
	note = {\_eprint: https://asistdl.onlinelibrary.wiley.com/doi/pdf/10.1002/meet.14504201150},
	keywords = {biomedical information, information needs, information resources, information seeking, usage studies}
}


@book{strauss_social_2017,
  title={Social organization of medical work},
  author={Strauss, Anselm L and Fagerhaugh, Shizuko and Suczek, Barbara and Wiener, Carolyn},
  year={2017},
  publisher={Routledge}
}

@article{kaziunas_localizing_2013,
  title={Localizing chronic disease management: Information work and health translations},
  author={Kaziunas, Elizabeth and Ackerman, Mark S and Veinot, Tiffany CE},
  journal={Proceedings of the American Society for Information Science and Technology},
  volume={50},
  number={1},
  pages={1--10},
  year={2013},
  publisher={Wiley Online Library}
}



@article{kaziunas_lived_2018,
	title = {Lived {Data}: {Tinkering} {With} {Bodies}, {Code}, and {Care} {Work}},
	volume = {33},
	issn = {0737-0024},
	shorttitle = {Lived {Data}},
	url = {https://doi.org/10.1080/07370024.2017.1307749},
	doi = {10.1080/07370024.2017.1307749},
	abstract = {Human–computer interaction research on personal informatics in health care has focused on systems that aim to support patient empowerment and enable better health outcomes with data monitoring and tracking. Through examining the lived experience of personal data used to manage chronic illness, we show how such technology design is also the site of radical dependencies, collaborative care arrangements, and wider sociopolitical concerns tied to new forms of technical labor and shifts in medical expertise. Drawing from ethnographic research with open source, do-it-yourself collectives engaged in opening up corporate-controlled type 1 diabetes devices and data, we propose the analytical lens of lived data. Lived data emphasize data as an integral way of living, enacted through a multiplicity of things, relations, and practices, from bodies and needles, social media support groups, and legal processes to writing code, making visualizations, and hacking devices. Building on critical and feminist scholarship of human–machine relations, we articulate the work that goes into producing and living personal data, the physical and emotional costs of data tracking, and the consequences of do-it-yourself as a form of individual empowerment in health and wellness.},
	number = {1},
	urldate = {2021-06-14},
	journal = {Human–Computer Interaction},
	author = {Kaziunas, Elizabeth and Lindtner, Silvia and Ackerman, Mark S. and Lee, Joyce M.},
	month = jan,
	year = {2018},
	note = {Publisher: Taylor \& Francis
\_eprint: https://doi.org/10.1080/07370024.2017.1307749},
	pages = {49--92}
}

@article{hung_data_2022,
	title = {Data {Checkers}: {A} {Grid}-{Based} {UI} for {Managing} {Patient}-{Generated} {Data} {Sharing} to {Support} {Collaborative} {Self}-{Care}},
	volume = {3},
	issn = {2624-9898},
	shorttitle = {Data {Checkers}},
	url = {https://www.frontiersin.org/article/10.3389/fcomp.2021.639748},
	doi = {10.3389/fcomp.2021.639748},
	abstract = {Chronic health conditions are becoming increasingly prevalent. As part of chronic care, sharing patient-generated health data (PGHD) is likely to play a prominent role. Sharing PGHD is increasingly recognized as potentially useful for not only monitoring health conditions but for informing and supporting collaboration with caregivers and healthcare providers. In this paper, we describe a new design for the fine-grained control over sharing one's PGHD to support collaborative self-care, one that centers on giving people with health conditions control over their own data. The system, Data Checkers (DC), uses a grid-based interface and a preview feature to provide users with the ability to control data access and dissemination. DC is of particular use in the case of severe chronic conditions, such as spinal cord injuries and disorders (SCI/D), that require not just intermittent involvement of healthcare providers but daily support and assistance from caregivers. In this paper, after providing relevant background information, we articulate our steps for developing this innovative system for sharing PGHD including (a) use of a co-design process; (b) identification of design requirements; and (c) creation of the DC System. We then present a qualitative evaluation of DC to show how DC satisfied these design requirements in a way that provided advantages for care. Our work extends existing research in the areas of Human-Computer Interaction (HCI), Computer-Supported Cooperative Work (CSCW), Ubiquitous Computing (Ubicomp), and Health Informatics about sharing data and PGHD.},
	urldate = {2022-01-11},
	journal = {Frontiers in Computer Science},
	author = {Hung, Pei-Yao and Canada, Drew and Meade, Michelle A. and Ackerman, Mark S.},
	year = {2022}
}

@inproceedings{hung_helping_2022,
	address = {New York, NY, USA},
	series = {{PervasiveHealth}'21},
	title = {Helping {People} to {Control} {Their} {Everyday} {Data} for {Care}: {A} {Scenario}-{Based} {Study}},
	abstract = {With the advent of pervasive sensing devices, data capturedabout one's everyday life (e.g., heart rate, sleep quality, emotion, or social activity) offers enormous possibilities for promoting in-home healthcare for severe chronic care, such as can be found in Spinal Cord Injuryor Disorders or the like. Sharing these Everyday Data for Care (EDC) allows care team personnel (e.g., caregivers and clinicians) to assist with health monitoring and decision-making, but will also create tension and concerns (e.g., privacy) for people with health conditions due to the detailed nature of the data. Resolving these tensions and concerns is criticalfor the adoption and use of a pervasive healthcare environment. We examine data sharing of EDC to determine how we can better manage the tradeoffs between privacy on one hand and the proactive sharing of data that one needs for better care. In this paper, we target one criticalaspect of using EDC, the problem of sharing an overwhelming number of sensor outputs with numerous care team recipients. We report the results of a scenario-based study that examined ways to reduce the burden of setting policies or rules to manage both the proactive data sharing and the privacy aspects of care with EDC. In summary, we found that our participants were able to use self-generated groupings of EDC data, and more importantly, largely kept those groupings when creating to share data with potential recipients and when dealing with changes in their health trajectory. These findings offer hope that we can reduce the burden of authoring and maintaining data sharing and privacy policies through semi-automatic mechanisms, where the system suggests policies that are consistent with the users' preferences - especially as health changes.},
	booktitle = {Proceedings of the 15th {EAI} {International} {Conference} on {Pervasive} {Computing} {Technologies} for {Healthcare}},
	publisher = {ACM},
	author = {Hung, Pei-Yao and Ackerman, Mark S.},
	year = {2022},
	keywords = {care network., care team, chronic care, control, data sharing, patient-generated health data, privacy, self-care},
}



@book{snyder_paper_2003,
	title = {Paper {Prototyping}: {The} {Fast} and {Easy} {Way} to {Design} and {Refine} {User} {Interfaces}},
	isbn = {978-1-55860-870-2},
	shorttitle = {Paper {Prototyping}},
	abstract = {Do you spend a lot of time during the design process wondering what users really need? Do you hate those endless meetings where you argue how the interface should work? Have you ever developed something that later had to be completely redesigned? Paper Prototyping can help. Written by a usability engineer with a long and successful paper prototyping history, this book is a practical, how-to guide that will prepare you to create and test paper prototypes of all kinds of user interfaces. You'll see how to simulate various kinds of interface elements and interactions. You'll learn about the practical aspects of paper prototyping, such as deciding when the technique is appropriate, scheduling the activities, and handling the skepticism of others in your organization. Numerous case studies and images throughout the book show you real world examples of paper prototyping at work. Learn how to use this powerful technique to develop products that are more useful, intuitive, efficient, and pleasing: * Save time and money - solve key problems before implementation begins * Get user feedback early - use it to focus the development process * Communicate better - involve development team members from a variety of disciplines * Be more creative - experiment with many ideas before committing to one *Enables designers to solve design problems before implementation begins *Five case studies provide real world examples of paper prototyping at work *Delves into the specifics of what types of projects paper prototyping is and isn't good for.},
	publisher = {Morgan Kaufmann},
	author = {Snyder, Carolyn},
	year = {2003},
	note = {Google-Books-ID: YgBojJsVLGMC},
	keywords = {Computers / Human-Computer Interaction (HCI), Computers / Software Development \& Engineering / Systems Analysis \& Design}
}



@inproceedings{owen_concap:_2015,
	address = {New York, NY, USA},
	series = {{MobileHCI} '15},
	title = {{ConCap}: {Designing} to {Empower} {Individual} {Reflection} on {Chronic} {Conditions} {Using} {Mobile} {Apps}},
	isbn = {978-1-4503-3652-9},
	shorttitle = {{ConCap}},
	url = {http://doi.acm.org/10.1145/2785830.2785881},
	doi = {10.1145/2785830.2785881},
	abstract = {The world is faced with a growing number of people who live with chronic medical conditions. There have been numerous digital interventions into personal management of these diseases in recent years, yet gaps remain in the HCI literature. In particular, we lack a systematic understanding of user requirements in tools that support independent management while away from external influences. This paper presents a first investigation into low-intervention support for self-management. A mobile application enabled individuals to capture contextual information related to their health in the form of photographs. Through a month-long user study, we identify four management trends amongst our participants and describe their influence on mobile application adoption.},
	booktitle = {Proceedings of the 17th {International} {Conference} on {Human}-{Computer} {Interaction} with {Mobile} {Devices} and {Services}},
	publisher = {ACM},
	author = {Owen, Tom and Pearson, Jennifer and Thimbleby, Harold and Buchanan, George},
	year = {2015},
	keywords = {deployment studies, diabetes, health care, ubiquitous computing, chronic disease management},
	pages = {105--114}
}


@inproceedings{mamykina_investigating_2006,
	address = {New York, NY, USA},
	series = {{CHI} '06},
	title = {Investigating {Health} {Management} {Practices} of {Individuals} with {Diabetes}},
	isbn = {1-59593-372-7},
	url = {http://doi.acm.org.proxy.lib.umich.edu/10.1145/1124772.1124910},
	doi = {10.1145/1124772.1124910},
	abstract = {Chronic diseases, endemic in the rapidly aging population, are stretching the capacity of healthcare resources. Increasingly, individuals need to adopt proactive health attitudes and contribute to the management of their own health. We investigate existing diabetes self-management practices and ways in which reflection on prior actions impacts future lifestyle choices. The findings suggest that individuals generate and evaluate hypotheses regarding health implications of their actions. Thus, health-monitoring applications can assist individuals in making educated choices by facilitating discovery of correlations between their past actions and health states. Deployment of an early prototype of a health-monitoring application demonstrated the need for careful presentation techniques to promote more robust understanding and to avoid reinforcement of biases.},
	urldate = {2014-07-24},
	booktitle = {Proceedings of the {SIGCHI} {Conference} on {Human} {Factors} in {Computing} {Systems}},
	publisher = {ACM},
	author = {Mamykina, Lena and Mynatt, Elizabeth D. and Kaufman, David R.},
	year = {2006},
	keywords = {elderly, healthcare, home, qualitative studies, technology probes, monitoring},
	pages = {927--936}
}

@inproceedings{prasad_understanding_2012,
	address = {New York, NY, USA},
	series = {{WPES} '12},
	title = {Understanding {Sharing} {Preferences} and {Behavior} for {mHealth} {Devices}},
	isbn = {978-1-4503-1663-7},
	url = {http://doi.acm.org/10.1145/2381966.2381983},
	doi = {10.1145/2381966.2381983},
	abstract = {If people are not in control of the collection and sharing of their personal health information collected using mobile health (mHealth) devices and applications, privacy concerns could limit their willingness to use and reduce potential benefits provided via mHealth. We investigated users' willingness to share their personal information, collected using mHealth sensing devices, with their family, friends, third parties, and the public. Previous work employed hypothetical scenarios, surveys and interviews to understand people's information-sharing behavior; to the best of our knowledge, ours is the first privacy study where participants actually have the option to share their own information with real people. We expect our results can guide the development of privacy controls for mobile devices and applications that collect any personal and activity information, not restricted to health or fitness information. Our study revealed three interesting findings about people's privacy concerns regarding their sensed health information: 1) We found that people share certain health information less with friends and family than with strangers, but more with specific third parties than the public. 2) Information that people were less willing to share could be information that is indirectly collected by the mobile devices. 3) We confirmed that privacy concerns are not static; mHealth device users may change their sharing decisions over time. Based on our findings, we emphasize the need for sensible default settings and flexible privacy controls to allow people to choose different settings for different recipients, and to change their sharing settings at any time.},
	urldate = {2014-04-15},
	booktitle = {Proceedings of the 2012 {ACM} {Workshop} on {Privacy} in the {Electronic} {Society}},
	publisher = {ACM},
	author = {Prasad, Aarathi and Sorber, Jacob and Stablein, Timothy and Anthony, Denise and Kotz, David},
	year = {2012},
	keywords = {mHealth, mobile, health, privacy, Privacy, mhealth},
	pages = {117--128}
}

@article{servos_current_2017,
	title = {Current {Research} and {Open} {Problems} in {Attribute}-{Based} {Access} {Control}},
	volume = {49},
	issn = {0360-0300},
	url = {http://doi.acm.org/10.1145/3007204},
	doi = {10.1145/3007204},
	abstract = {Attribute-based access control (ABAC) is a promising alternative to traditional models of access control (i.e., discretionary access control (DAC), mandatory access control (MAC), and role-based access control (RBAC)) that is drawing attention in both recent academic literature and industry application. However, formalization of a foundational model of ABAC and large scale adoption is still in its infancy. The relatively recent emergence of ABAC still leaves a number of problems unexplored. Issues like delegation, administration, auditability, scalability, hierarchical representations, and the like, have been largely ignored or left to future work. This article provides a basic introduction to ABAC and a comprehensive review of recent research efforts toward developing formal models of ABAC. A taxonomy of ABAC research is presented and used to categorize and evaluate surveyed articles. Open problems are identified based on the shortcomings of the reviewed works and potential solutions discussed.},
	number = {4},
	urldate = {2018-03-24},
	journal = {ACM Comput. Surv.},
	author = {Servos, Daniel and Osborn, Sylvia L.},
	month = jan,
	year = {2017},
	keywords = {survey, access control, ABAC models, Attribute-based access control (ABAC)},
	pages = {65:1--65:45}
}

@article{kirrane_access_2017,
	title = {Access control and the resource description framework: {A} survey},
	volume = {8},
	number = {2},
	journal = {Semantic Web},
	author = {Kirrane, Sabrina and Mileo, Alessandra and Decker, Stefan},
	year = {2017},
	pages = {311--352}
}

@misc{oasis_open_extensible_2013,
	title = {{eXtensible} {Access} {Control} {Markup} {Language} ({XACML}) {Version} 3.0},
	url = {http://docs.oasis-open.org/xacml/3.0/xacml-3.0-core-spec-os-en.html},
	urldate = {2018-03-28},
	author = {{OASIS Open}},
	month = jan,
	year = {2013}
}

@book{strauss_social_1997,
	title = {Social {Organization} of {Medical} {Work}},
	isbn = {978-1-4128-3439-1},
	abstract = {Today we face the painful reality of the prevalence of chronic, rather than acute, diseases. The technologies developed to manager long-term, incurable illnesses have radically and irrevocably altered the organizational structure of health care, presenting us with a frequently bewildering array of medical specialties. Social Organization of Medical Work offers essential insight into this new era of health care.  Through richly documented, often gripping case studies, Anselm Strauss and his co-authors show us exactly how health workers are confronting the problems created by chronic disease and coping with today's highly technologized hospitals. They guide us through the various hospital work sites, describing in detail the kinds of tasks performed by medical personnel, the interactions of staff members with each other and with patients, and the overall resulting patient treatment and response.  Focusing on the concept of illness trajectory, the authors vividly illustrate the complex, contingent nature of modern medical work. For example, open heart surgery keeps ill persons alive and may even improve them symptomatically, but those who do survive must face an uncertain future in terms of the physiological consequences of the surgery and the drugs required. They also have to adjust t altered lifestyles. In the new introduction, Anselm Strauss discusses the continuing importance of this work to sociologists, medical scholars, and medical professionals.},
	language = {en},
	publisher = {Transaction Publishers},
	author = {Strauss, Anselm Leonard and Fagerhaugh, Shizuko and Suczek, Barbara and Wiener, Carolyn},
	month = jan,
	year = {1997},
	keywords = {Medical / General, Medical / Health Risk Assessment}
}

@online{w3c_web_accessibility_initiative_wai_web_2021,
	title = {Web {Content} {Accessibility} {Guidelines} ({WCAG}) {Overview}},
	url = {https://www.w3.org/WAI/standards-guidelines/wcag/},
	abstract = {Introduces the Web Content Accessibility Guidelines (WCAG) international standard, including WCAG 2.0 and WCAG 2.1. WCAG documents explain how to make web content more accessible to people with disabilities.},
	language = {en},
	urldate = {2021-06-09},
	journal = {Web Accessibility Initiative (WAI)},
	author = {{W3C Web Accessibility Initiative}},
	year = {2021}
}

@inproceedings{hung_discount_2015,
  title={Discount Expertise Metrics for Augmenting Community Interaction},
  author={Hung, Pei-Yao and Ackerman, Mark S},
  booktitle={Proceedings of the Work-In-Progress Track of the 7th International Conference on Communities and Technologies},
  volume={12},
  number={1},
  pages={43--52},
  year={2015}
}


@article{bodenheimer_patient_2002,
	title = {Patient {Self}-management of {Chronic} {Disease} in {Primary} {Care}},
	volume = {288},
	issn = {0098-7484},
	url = {https://doi.org/10.1001/jama.288.19.2469},
	doi = {10.1001/jama.288.19.2469},
	abstract = {Patients with chronic conditions make day-to-day decisions about—self-manage—their
illnesses. This reality introduces a new chronic disease paradigm: the patient-professional
partnership, involving collaborative care and self-management education. Self-management
education complements traditional patient education in supporting patients
to live the best possible quality of life with their chronic condition. Whereas
traditional patient education offers information and technical skills, self-management
education teaches problem-solving skills. A central concept in self-management
is self-efficacy—confidence to carry out a behavior necessary to reach
a desired goal. Self-efficacy is enhanced when patients succeed in solving
patient-identified problems. Evidence from controlled clinical trials suggests
that (1) programs teaching self-management skills are more effective than
information-only patient education in improving clinical outcomes; (2) in
some circumstances, self-management education improves outcomes and can reduce
costs for arthritis and probably for adult asthma patients; and (3) in initial
studies, a self-management education program bringing together patients with
a variety of chronic conditions may improve outcomes and reduce costs. Self-management
education for chronic illness may soon become an integral part of high-quality
primary care.},
	number = {19},
	urldate = {2021-12-06},
	journal = {JAMA},
	author = {Bodenheimer, Thomas and Lorig, Kate and Holman, Halsted and Grumbach, Kevin},
	month = nov,
	year = {2002},
	pages = {2469--2475}
}


@article{huang_public_2018,
	title = {Public {Trust} in {Physicians}—{Health} {Care} {Commodification} as a {Possible} {Deteriorating} {Factor}: {Cross}-sectional {Analysis} of 23 {Countries}},
	volume = {55},
	issn = {0046-9580},
	shorttitle = {Public {Trust} in {Physicians}—{Health} {Care} {Commodification} as a {Possible} {Deteriorating} {Factor}},
	url = {https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5843089/},
	doi = {10.1177/0046958018759174},
	abstract = {Trust in physicians has declined, and surveys of public opinion show a poor level of public trust in physicians. Commodification of health care has been speculated as a plausible driving force. We used cross-national data of 23 countries from the International Social Survey Programme 2011 to quantify health care commodification and study its role in the trust that patients generally place in physicians. A modified health care index was used to quantify health care commodification. There were 34 968 respondents. A question about the level of general trust in physicians and a 4-item “general trust in physicians” scale were used as our major and minor outcomes. The results were that compared with those in the reference countries, the respondents in the health care–commodified countries were approximately half as likely to trust physicians (odds ratio: 0.47, 95\% confidence interval [CI]: 0.31-0.72) and scored 1.13 (95\% CI: 1.89-0.37) less on the general trust scale. However, trust in physicians in the health care–decommodified countries did not differ from that in the reference countries. In conclusion, health care commodification may play a meaningful role in the deterioration of public trust in physicians.},
	urldate = {2021-12-10},
	journal = {Inquiry: A Journal of Medical Care Organization, Provision and Financing},
	author = {Huang, Ellery Chih-Han and Pu, Christy and Chou, Yiing-Jenq and Huang, Nicole},
	month = mar,
	year = {2018},
	pmid = {29502479},
	pmcid = {PMC5843089},
	pages = {0046958018759174}
}



@inproceedings{ackerman_answer_1990,
	address = {New York, NY, USA},
	series = {{COCS} '90},
	title = {Answer {Garden}: {A} {Tool} for {Growing} {Organizational} {Memory}},
	isbn = {0-89791-358-2},
	shorttitle = {Answer {Garden}},
	url = {http://doi.acm.org/10.1145/91474.91485},
	doi = {10.1145/91474.91485},
	abstract = {Answer Garden allows organizations to develop databases of commonly asked questions that grow “organically” as new questions arise and are answered. It is designed to help in situations (such as field service organizations and customer “hot lines”) where there is a continuing stream of questions, many of which occur over and over, but some of which the organization has never seen before. The system includes a branching network of diagnostic questions that helps users find the answers they want. If the answer is not present, the system automatically sends the question to the appropriate expert, and the answer is returned to the user as well as inserted into the branching network. Experts can also modify this network in response to users' problems.
Our initial Answer Garden database contains questions and answers about how to use the X Window System.},
	urldate = {2013-11-15},
	booktitle = {Proceedings of the {ACM} {SIGOIS} and {IEEE} {CS} {TC}-{OA} {Conference} on {Office} {Information} {Systems}},
	publisher = {ACM},
	author = {Ackerman, M. S. and Malone, T. W.},
	year = {1990},
	pages = {31--39}
}

@inproceedings{ackerman_answer_1996,
	address = {New York, NY, USA},
	series = {{CSCW} '96},
	title = {Answer {Garden} 2: {Merging} {Organizational} {Memory} with {Collaborative} {Help}},
	isbn = {0-89791-765-0},
	shorttitle = {Answer {Garden} 2},
	url = {http://doi.acm.org/10.1145/240080.240203},
	doi = {10.1145/240080.240203},
	urldate = {2013-11-15},
	booktitle = {Proceedings of the 1996 {ACM} {Conference} on {Computer} {Supported} {Cooperative} {Work}},
	publisher = {ACM},
	author = {Ackerman, Mark S. and McDonald, David W.},
	year = {1996},
	keywords = {CMC, CSCW, Information systems, collaborative help, community memory, computer-mediated communications, computer-supported cooperative work, corporate memory, group memory, help, information access, information refining, information systems, organizational memory, Information retrieval},
	pages = {97--105}
}