Pub Date : 2020-04-21eCollection Date: 2020-04-01DOI: 10.1145/3313831.3376278
Dorota Chapko, Pino Frumiento, Nalini Edwards, Lizzie Emeh, Donald Kennedy, David McNicholas, Michaela Overton, Mark Snead, Robyn Steward, Jenny M Sutton, Evie Jeffreys, Catherine Long, Jess Croll-Knight, Ben Connors, Sam Castell-Ward, David Coke, Bethany McPeake, William Renel, Chris McGinley, Anna Remington, Dora Whittuck, John Kieffer, Sarah Ewans, Mark Williams, Mick Grierson
Public attitudes towards learning disabilities (LDs) are generally reported as positive, inclusive and empathetic. However, these findings do not reflect the lived experiences of people with LDs. To shed light on this disparity, a team of co-researchers with LDs created the first online survey to challenge public understanding of LDs, asking questions in ways that are important to them and represent how they see themselves. Here, we describe and evaluate the process of creating an accessible survey platform and an online survey in a research team consisting of academic and non-academic professionals with and without LDs or autism. Through this inclusive research process, the co-designed survey met the expectations of the co-researchers and was well-received by the initial survey respondents. We reflect on the co-researchers' perspectives following the study completion, and consider the difficulties and advantages we encountered deploying such approaches and their potential implications on future survey data analysis.
{"title":"\"We have been magnified for years - Now you are under the microscope!\": Co-researchers with Learning Disabilities Created an Online Survey to Challenge Public Understanding of Learning Disabilities.","authors":"Dorota Chapko, Pino Frumiento, Nalini Edwards, Lizzie Emeh, Donald Kennedy, David McNicholas, Michaela Overton, Mark Snead, Robyn Steward, Jenny M Sutton, Evie Jeffreys, Catherine Long, Jess Croll-Knight, Ben Connors, Sam Castell-Ward, David Coke, Bethany McPeake, William Renel, Chris McGinley, Anna Remington, Dora Whittuck, John Kieffer, Sarah Ewans, Mark Williams, Mick Grierson","doi":"10.1145/3313831.3376278","DOIUrl":"10.1145/3313831.3376278","url":null,"abstract":"<p><p>Public attitudes towards learning disabilities (LDs) are generally reported as positive, inclusive and empathetic. However, these findings do not reflect the lived experiences of people with LDs. To shed light on this disparity, a team of co-researchers with LDs created the first online survey to challenge public understanding of LDs, asking questions in ways that are important to them and represent how they see themselves. Here, we describe and evaluate the process of creating an accessible survey platform and an online survey in a research team consisting of academic and non-academic professionals with and without LDs or autism. Through this inclusive research process, the co-designed survey met the expectations of the co-researchers and was well-received by the initial survey respondents. We reflect on the co-researchers' perspectives following the study completion, and consider the difficulties and advantages we encountered deploying such approaches and their potential implications on future survey data analysis.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"20 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7116086/pdf/EMS86713.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38492358","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Technology design for dementia is an active and growing area. Though work to date has largely addressed functional needs, there is a growing recognition of the importance of supporting meaningful activities. However, technology for active, rather than passive, engagement is relatively novel beyond specific applications (e.g., music or reminiscence therapy). To better understand how to support active engagement of people with dementia in activities, we interviewed nineteen practitioners. Our findings reveal differing approaches to making sense of the actions of people with dementia, as well as to engaging them in activities. We discuss the importance of tracing epistemological understandings of dementia to different configurations of technology for people living with dementia and provide a practical guide to support designers to do so. Finally, we discuss considerations for the design of dementia technologies around facilitating self-actualization and managing emotional exposure for care-providers.
{"title":"Approach Matters: Linking Practitioner Approaches to Technology Design for People with Dementia.","authors":"Emma Dixon, Amanda Lazar","doi":"10.1145/3313831.3376432","DOIUrl":"10.1145/3313831.3376432","url":null,"abstract":"<p><p>Technology design for dementia is an active and growing area. Though work to date has largely addressed functional needs, there is a growing recognition of the importance of supporting meaningful activities. However, technology for active, rather than passive, engagement is relatively novel beyond specific applications (e.g., music or reminiscence therapy). To better understand how to support active engagement of people with dementia in activities, we interviewed nineteen practitioners. Our findings reveal differing approaches to making sense of the actions of people with dementia, as well as to engaging them in activities. We discuss the importance of tracing epistemological understandings of dementia to different configurations of technology for people living with dementia and provide a practical guide to support designers to do so. Finally, we discuss considerations for the design of dementia technologies around facilitating self-actualization and managing emotional exposure for care-providers.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7383934/pdf/nihms-1609034.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38199348","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
We examine the association between user interactions with a checklist and task performance in a time-critical medical setting. By comparing 98 logs from a digital checklist for trauma resuscitation with activity logs generated by video review, we identified three non-compliant checklist use behaviors: failure to check items for completed tasks, falsely checking items when tasks were not performed, and inaccurately checking items for incomplete tasks. Using video review, we found that user perceptions of task completion were often misaligned with clinical practices that guided activity coding, thereby contributing to non-compliant check-offs. Our analysis of associations between different contexts and the timing of check-offs showed longer delays when (1) checklist users were absent during patient arrival, (2) patients had penetrating injuries, and (3) resuscitations were assigned to the highest acuity. We discuss opportunities for reconsidering checklist designs to reduce non-compliant checklist use.
{"title":"Checklist Design Reconsidered: Understanding Checklist Compliance and Timing of Interactions.","authors":"Leah Kulp, Aleksandra Sarcevic, Yinan Zheng, Megan Cheng, Emily Alberto, Randall Burd","doi":"10.1145/3313831.3376853","DOIUrl":"https://doi.org/10.1145/3313831.3376853","url":null,"abstract":"<p><p>We examine the association between user interactions with a checklist and task performance in a time-critical medical setting. By comparing 98 logs from a digital checklist for trauma resuscitation with activity logs generated by video review, we identified three non-compliant checklist use behaviors: failure to check items for completed tasks, falsely checking items when tasks were not performed, and inaccurately checking items for incomplete tasks. Using video review, we found that user perceptions of task completion were often misaligned with clinical practices that guided activity coding, thereby contributing to non-compliant check-offs. Our analysis of associations between different contexts and the timing of check-offs showed longer delays when (1) checklist users were absent during patient arrival, (2) patients had penetrating injuries, and (3) resuscitations were assigned to the highest acuity. We discuss opportunities for reconsidering checklist designs to reduce non-compliant checklist use.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/3313831.3376853","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38169872","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Blind people have limited access to information about their surroundings, which is important for ensuring one's safety, managing social interactions, and identifying approaching pedestrians. With advances in computer vision, wearable cameras can provide equitable access to such information. However, the always-on nature of these assistive technologies poses privacy concerns for parties that may get recorded. We explore this tension from both perspectives, those of sighted passersby and blind users, taking into account camera visibility, in-person versus remote experience, and extracted visual information. We conduct two studies: an online survey with MTurkers (N=206) and an in-person experience study between pairs of blind (N=10) and sighted (N=40) participants, where blind participants wear a working prototype for pedestrian detection and pass by sighted participants. Our results suggest that both of the perspectives of users and bystanders and the several factors mentioned above need to be carefully considered to mitigate potential social tensions.
{"title":"Pedestrian Detection with Wearable Cameras for the Blind: A Two-way Perspective.","authors":"Kyungjun Lee, Daisuke Sato, Saki Asakawa, Hernisa Kacorri, Chieko Asakawa","doi":"10.1145/3313831.3376398","DOIUrl":"10.1145/3313831.3376398","url":null,"abstract":"<p><p>Blind people have limited access to information about their surroundings, which is important for ensuring one's safety, managing social interactions, and identifying approaching pedestrians. With advances in computer vision, wearable cameras can provide equitable access to such information. However, the always-on nature of these assistive technologies poses privacy concerns for parties that may get recorded. We explore this tension from both perspectives, those of sighted passersby and blind users, taking into account camera visibility, in-person versus remote experience, and extracted visual information. We conduct two studies: an online survey with MTurkers (N=206) and an in-person experience study between pairs of blind (N=10) and sighted (N=40) participants, where blind participants wear a working prototype for pedestrian detection and pass by sighted participants. Our results suggest that both of the perspectives of users and bystanders and the several factors mentioned above need to be carefully considered to mitigate potential social tensions.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7423406/pdf/nihms-1609038.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38279843","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rachel Kornfield, Renwen Zhang, Jennifer Nicholas, Stephen M Schueller, Scott A Cambo, David C Mohr, Madhu Reddy
While the HCI field increasingly examines how digital tools can support individuals in managing mental health conditions, it remains unclear how these tools can accommodate these conditions' temporal aspects. Based on weekly interviews with five individuals with depression, conducted over six weeks, this study identifies design opportunities and challenges related to extending technology-based support across fluctuating symptoms. Our findings suggest that participants perceive events and contexts in daily life to have marked impact on their symptoms. Results also illustrate that ebbs and flows in symptoms profoundly affect how individuals practice depression self-management. While digital tools often aim to reach individuals while they feel depressed, we suggest they should also engage individuals when they are less symptomatic, leveraging their energy and motivation to build habits, establish plans and goals, and generate and organize content to prepare for symptom onset.
{"title":"\"Energy is a Finite Resource\": Designing Technology to Support Individuals across Fluctuating Symptoms of Depression.","authors":"Rachel Kornfield, Renwen Zhang, Jennifer Nicholas, Stephen M Schueller, Scott A Cambo, David C Mohr, Madhu Reddy","doi":"10.1145/3313831.3376309","DOIUrl":"10.1145/3313831.3376309","url":null,"abstract":"<p><p>While the HCI field increasingly examines how digital tools can support individuals in managing mental health conditions, it remains unclear how these tools can accommodate these conditions' temporal aspects. Based on weekly interviews with five individuals with depression, conducted over six weeks, this study identifies design opportunities and challenges related to extending technology-based support across fluctuating symptoms. Our findings suggest that participants perceive events and contexts in daily life to have marked impact on their symptoms. Results also illustrate that ebbs and flows in symptoms profoundly affect how individuals practice depression self-management. While digital tools often aim to reach individuals while they feel depressed, we suggest they should also engage individuals when they are less symptomatic, leveraging their energy and motivation to build habits, establish plans and goals, and generate and organize content to prepare for symptom onset.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7877799/pdf/nihms-1590315.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25368056","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Elizabeth L Murnane, Xin Jiang, Anna Kong, Michelle Park, Weili Shi, Connor Soohoo, Luke Vink, Iris Xia, Yu Xin, John Yang-Sammataro, Grace Young, Jenny Zhi, Paula Moya, James A Landay
Numerous technologies now exist for promoting more active lifestyles. However, while quantitative data representations (e.g., charts, graphs, and statistical reports) typify most health tools, growing evidence suggests such feedback can not only fail to motivate behavior but may also harm self-integrity and fuel negative mindsets about exercise. Our research seeks to devise alternative, more qualitative schemes for encoding personal information. In particular, this paper explores the design of data-driven narratives, given the intuitive and persuasive power of stories. We present WhoIsZuki, a smartphone application that visualizes physical activities and goals as components of a multi-chapter quest, where the main character's progress is tied to the user's. We report on our design process involving online surveys, in-lab studies, and in-the-wild deployments, aimed at refining the interface and the narrative and gaining a deep understanding of people's experiences with this type of feedback. From these insights, we contribute recommendations to guide future development of narrative-based applications for motivating healthy behavior.
{"title":"Designing Ambient Narrative-Based Interfaces to Reflect and Motivate Physical Activity.","authors":"Elizabeth L Murnane, Xin Jiang, Anna Kong, Michelle Park, Weili Shi, Connor Soohoo, Luke Vink, Iris Xia, Yu Xin, John Yang-Sammataro, Grace Young, Jenny Zhi, Paula Moya, James A Landay","doi":"10.1145/3313831.3376478","DOIUrl":"10.1145/3313831.3376478","url":null,"abstract":"<p><p>Numerous technologies now exist for promoting more active lifestyles. However, while quantitative data representations (e.g., charts, graphs, and statistical reports) typify most health tools, growing evidence suggests such feedback can not only fail to motivate behavior but may also harm self-integrity and fuel negative mindsets about exercise. Our research seeks to devise alternative, more qualitative schemes for encoding personal information. In particular, this paper explores the design of data-driven narratives, given the intuitive and persuasive power of stories. We present WhoIsZuki, a smartphone application that visualizes physical activities and goals as components of a multi-chapter quest, where the main character's progress is tied to the user's. We report on our design process involving online surveys, in-lab studies, and in-the-wild deployments, aimed at refining the interface and the narrative and gaining a deep understanding of people's experiences with this type of feedback. From these insights, we contribute recommendations to guide future development of narrative-based applications for motivating healthy behavior.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/3313831.3376478","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38893070","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
James Hodge, Sarah Foley, Rens Brankaert, Gail Kenning, Amanda Lazar, Jennifer Boger, Kellie Morrissey
Engaging in participatory research in HCI raises numerous ethical complexities such as consent, researcher relationships, and participant compensation. Doing HCI work in the area of dementia amplifies these issues, and researchers in this area are modelling ethical stances to ensure researcher-participant relationships focus on meaningful engagement and care. This paper presents an insight into the kinds of ethical foci required when doing design research with people living with dementia and their carers. We interviewed 22 HCI researchers with experience working in dementia care contexts. Our qualitative analysis outlines subsequent lessons-learned, such as recognition of the participants, self-care, research impact, and subjectivity in ethical review boards. Furthermore, we found the complexity of navigating both "everyday" and more formal, institutional ethics in dementia research has implications beyond the context of working with people with dementia and outline key considerations for ethical practices in socially orientated HCI research.
{"title":"Relational, Flexible, Everyday: Learning from Ethics in Dementia Research.","authors":"James Hodge, Sarah Foley, Rens Brankaert, Gail Kenning, Amanda Lazar, Jennifer Boger, Kellie Morrissey","doi":"10.1145/3313831.3376627","DOIUrl":"10.1145/3313831.3376627","url":null,"abstract":"<p><p>Engaging in participatory research in HCI raises numerous ethical complexities such as consent, researcher relationships, and participant compensation. Doing HCI work in the area of dementia amplifies these issues, and researchers in this area are modelling ethical stances to ensure researcher-participant relationships focus on meaningful engagement and care. This paper presents an insight into the kinds of ethical foci required when doing design research with people living with dementia and their carers. We interviewed 22 HCI researchers with experience working in dementia care contexts. Our qualitative analysis outlines subsequent lessons-learned, such as recognition of the participants, self-care, research impact, and subjectivity in ethical review boards. Furthermore, we found the complexity of navigating both \"everyday\" and more formal, institutional ethics in dementia research has implications beyond the context of working with people with dementia and outline key considerations for ethical practices in socially orientated HCI research.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7377302/pdf/nihms-1609045.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38186493","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Emily G Lattie, Rachel Kornfield, Kathryn E Ringland, Renwen Zhang, Nathan Winquist, Madhu Reddy
The last decade has seen increased reports of mental health problems among college students, with college counseling centers struggling to keep up with the demand for services. Digital mental health tools offer a potential solution to expand the reach of mental health services for college students. In this paper, we present findings from a series of design activities conducted with college students and counseling center staff aimed at identifying needs and preferences for digital mental health tools. Results emphasize the social ecosystems and social support networks in a college student's life. Our findings highlight the predominant role of known peers, and the ancillary roles of unknown peers and non-peers (e.g., faculty, family) in influencing the types of digital mental health tools students desire, and the ways in which they want to learn about mental health tools. We identify considerations for designing digital mental health tools for college students that take into account the identified social factors and roles.
{"title":"Designing Mental Health Technologies that Support the Social Ecosystem of College Students.","authors":"Emily G Lattie, Rachel Kornfield, Kathryn E Ringland, Renwen Zhang, Nathan Winquist, Madhu Reddy","doi":"10.1145/3313831.3376362","DOIUrl":"10.1145/3313831.3376362","url":null,"abstract":"<p><p>The last decade has seen increased reports of mental health problems among college students, with college counseling centers struggling to keep up with the demand for services. Digital mental health tools offer a potential solution to expand the reach of mental health services for college students. In this paper, we present findings from a series of design activities conducted with college students and counseling center staff aimed at identifying needs and preferences for digital mental health tools. Results emphasize the social ecosystems and social support networks in a college student's life. Our findings highlight the predominant role of known peers, and the ancillary roles of unknown peers and non-peers (e.g., faculty, family) in influencing the types of digital mental health tools students desire, and the ways in which they want to learn about mental health tools. We identify considerations for designing digital mental health tools for college students that take into account the identified social factors and roles.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7351354/pdf/nihms-1590316.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38147046","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Adam Rule, Isaac H Goldstein, Michael F Chiang, Michelle R Hribar
As healthcare providers have transitioned from paper to electronic health records they have gained access to increasingly sophisticated documentation aids such as custom note templates. However, little is known about how providers use these aids. To address this gap, we examine how 48 ophthalmologists and their staff create and use content-importing phrases - a customizable and composable form of note template - to document office visits across two years. In this case study, we find 1) content-importing phrases were used to document the vast majority of visits (95%), 2) most content imported by these phrases was structured data imported by data-links rather than boilerplate text, and 3) providers primarily used phrases they had created while staff largely used phrases created by other people. We conclude by discussing how framing clinical documentation as end-user programming can inform the design of electronic health records and other documentation systems mixing data and narrative text.
{"title":"Clinical Documentation as End-User Programming.","authors":"Adam Rule, Isaac H Goldstein, Michael F Chiang, Michelle R Hribar","doi":"10.1145/3313831.3376205","DOIUrl":"10.1145/3313831.3376205","url":null,"abstract":"<p><p>As healthcare providers have transitioned from paper to electronic health records they have gained access to increasingly sophisticated documentation aids such as custom note templates. However, little is known about how providers use these aids. To address this gap, we examine how 48 ophthalmologists and their staff create and use <i>content-importing phrases</i> - a customizable and composable form of note template - to document office visits across two years. In this case study, we find 1) content-importing phrases were used to document the vast majority of visits (95%), 2) most content imported by these phrases was structured data imported by data-links rather than boilerplate text, and 3) providers primarily used phrases they had created while staff largely used phrases created by other people. We conclude by discussing how framing clinical documentation as end-user programming can inform the design of electronic health records and other documentation systems mixing data and narrative text.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7901830/pdf/nihms-1559723.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25408945","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Justin Petelka, Lucy Van Kleunen, Liam Albright, Elizabeth Murnane, Stephen Voida, Jaime Snyder
Research in personal informatics (PI) calls for systems to support social forms of tracking, raising questions about how privacy can and should support intentionally sharing sensitive health information. We focus on the case of personal data related to the self-tracking of bipolar disorder (BD) in order to explore the ways in which disclosure activities intersect with other privacy experiences. While research in HCI often discusses privacy as a disclosure activity, this does not reflect the ways in which privacy can be passively experienced. In this paper we broaden conceptions of privacy by defining transparency experiences and contributing factors in contrast to disclosure activities and preferences. Next, we ground this theoretical move in empirical analysis of personal narratives shared by people managing BD. We discuss the resulting emergent model of transparency in terms of implications for the design of socially-enabled PI systems. CAUTION: This paper contains references to experiences of mental illness, including self-harm, depression, suicidal ideation, etc.
{"title":"Being (In)Visible: Privacy, Transparency, and Disclosure in the Self-Management of Bipolar Disorder.","authors":"Justin Petelka, Lucy Van Kleunen, Liam Albright, Elizabeth Murnane, Stephen Voida, Jaime Snyder","doi":"10.1145/3313831.3376573","DOIUrl":"https://doi.org/10.1145/3313831.3376573","url":null,"abstract":"<p><p>Research in personal informatics (PI) calls for systems to support social forms of tracking, raising questions about how privacy can and should support intentionally sharing sensitive health information. We focus on the case of personal data related to the self-tracking of bipolar disorder (BD) in order to explore the ways in which disclosure activities intersect with other privacy experiences. While research in HCI often discusses privacy as a disclosure activity, this does not reflect the ways in which privacy can be passively experienced. In this paper we broaden conceptions of privacy by defining <i>transparency</i> experiences and contributing factors in contrast to disclosure activities and preferences. Next, we ground this theoretical move in empirical analysis of personal narratives shared by people managing BD. We discuss the resulting emergent model of transparency in terms of implications for the design of socially-enabled PI systems. CAUTION: This paper contains references to experiences of mental illness, including self-harm, depression, suicidal ideation, etc.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/3313831.3376573","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25581609","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}