skip to main content
research-article

Sociocultural Dimensions of Tracking Health and Taking Care

Published: 15 October 2020 Publication History

Abstract

The field of personal health informatics has received increasing attention within the CSCW and HCI communities as health tracking becomes more affordable, accessible, and pervasive. Chronic disease management, in particular, presents tremendous potential for intervention given patients' ability to now actively participate in their care through tracking. The focus on 'personal' in health informatics, however, obfuscates the role of other cultural and ecological factors that might shape health tracking behaviors, and important information from alternative sources could be ignored by virtue of being subjective, complex, or simply hard to collect. To dig deeper into these negative spaces that may go untracked, uncover potential sources of important health information, and more completely understand current tracking practices, we embarked on an interview study with patients with cardiac diseases in Bangalore, India. In this paper, we present these patients' current health management approaches that are culturally situated, identifying both motivations and barriers to tracking, their attitudes towards online information, as well as cultural and ecological influences on their perceptions of cardiac care. We then discuss the interplay between our findings and current notions of, and approaches towards, patient empowerment and datafication of health.

References

[1]
Syed Ishtiaque Ahmed, Md. Romael Haque, Jay Chen, and Nicola Dell. 2017. Digital Privacy Challenges with Shared Mobile Phone Use in Bangladesh. Proc. ACM Hum.-Comput. Interact. 1, CSCW, Article 17 (Dec. 2017), 20 pages. https://doi.org/10.1145/3134652
[2]
Jessica S Ancker, Holly O Witteman, Baria Hafeez, Thierry Provencher, Mary Van de Graaf, and Esther Wei. 2015. 'You Get Reminded You're a Sick Person?: Personal Data Tracking and Patients With Multiple Chronic Conditions. J Med Internet Res 17, 8 (19 Aug 2015), e202. https://doi.org/10.2196/jmir.4209
[3]
Amid Ayobi, Paul Marshall, Anna L. Cox, and Yunan Chen. 2017. Quantifying the Body and Caring for the Mind: Self-Tracking in Multiple Sclerosis. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 6889--6901. https://doi.org/10.1145/3025453.3025869
[4]
Allan Berrocal and Katarzyna Wac. 2018. Peer-Ceived Well-Being: Exploring the Value of Peers for Human Stress Assessment in-Situ. In Proceedings of the 2018 ACM International Joint Conference and 2018 International Symposium Proc. ACM Hum.-Comput. Interact., Vol. 4, No. CSCW2, Article 129. Publication date: October 2020. Sociocultural Dimensions of Tracking Health and Taking Care 129:19 on Pervasive and Ubiquitous Computing and Wearable Computers (UbiComp '18). Association for Computing Machinery, New York, NY, USA, 492-497. https://doi.org/10.1145/3267305.3267319
[5]
Allan Berrocal and Katarzyna Wac. 2018. Peer-Vasive Computing: Leveraging Peers to Enhance the Accuracy of Self- Reports in Mobile Human Studies. In Proceedings of the 2018 ACM International Joint Conference and 2018 International Symposium on Pervasive and Ubiquitous Computing and Wearable Computers (UbiComp '18). Association for Computing Machinery, New York, NY, USA, 600-605. https://doi.org/10.1145/3267305.3267542
[6]
Andrew B. L. Berry, Catherine Lim, Andrea L. Hartzler, Tad Hirsch, Edward H. Wagner, Evette Ludman, and James D. Ralston. 2017. How Values Shape Collaboration Between Patients with Multiple Chronic Conditions and Spousal Caregivers. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 5257--5270. https://doi.org/10.1145/3025453.3025923
[7]
Nanyi Bi, Jeremy Birnholtz, and Susan Fussell. 2014. Intercultural Awareness: Cultural and Relational Effects on Awareness Information Gathering Behavior. (March 2014). https://doi.org/10.9776/14122
[8]
Matt Bonner and Elizabeth D Mynatt. 2014. Gauging the patient-centered potential of online health seeking. In Proceedings of the 8th International Conference on Pervasive Computing Technologies for Healthcare. 33--40.
[9]
Urie Bronfenbrenner. 1979. The ecology of human development. Harvard university press.
[10]
Adrian Bussone, Simone Stumpf, and George Buchanan. 2016. It Feels Like I'm Managing Myself: HIV+ People Tracking Their Personal Health Information. In Proceedings of the 9th Nordic Conference on Human-Computer Interaction (NordiCHI '16). ACM, New York, NY, USA, Article 55, 10 pages. https://doi.org/10.1145/2971485.2971542
[11]
Rajesh Chandwani and Vaibhavi Kulkarni. 2016. Who's the Doctor?: Physicians? Perception of Internet Informed Patients in India. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). ACM, New York, NY, USA, 3091--3102. https://doi.org/10.1145/2858036.2858500
[12]
Rajesh Chandwani and Neha Kumar. 2018. Stitching Infrastructures to Facilitate Telemedicine for Low-Resource Environments. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems (CHI '18). ACM, New York, NY, USA, Article 384, 12 pages. https://doi.org/10.1145/3173574.3173958
[13]
Emil Chiauzzi, Pronabesh DasMahapatra, Elisenda Cochin, Mikele Bunce, Raya Khoury, and Purav Dave. 2016. Factors in Patient Empowerment: A Survey of an Online Patient Research Network. The Patient 9, 6 (Dec. 2016), 511--523. https://doi.org/10.1007/s40271-016-0171--2
[14]
Eun Kyoung Choe, Nicole B. Lee, Bongshin Lee, Wanda Pratt, and Julie A. Kientz. 2014. Understanding Quantifiedselfers? Practices in Collecting and Exploring Personal Data. In Proceedings of the 32Nd Annual ACM Conference on Human Factors in Computing Systems (CHI '14). ACM, New York, NY, USA, 1143--1152. https://doi.org/10.1145/ 2556288.2557372
[15]
Chia-Fang Chung, Elena Agapie, Jessica Schroeder, Sonali Mishra, James Fogarty, and Sean A. Munson. 2017. When Personal Tracking Becomes Social: Examining the Use of Instagram for Healthy Eating. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 1674--1687. https: //doi.org/10.1145/3025453.3025747
[16]
Chia-Fang Chung, Jonathan Cook, Elizabeth Bales, Jasmine Zia, and Sean A Munson. 2015. More Than Telemonitoring: Health Provider Use and Nonuse of Life-Log Data in Irritable Bowel Syndrome and Weight Management. J Med Internet Res 17, 8 (21 Aug 2015), e203. https://doi.org/10.2196/jmir.4364
[17]
Chia-Fang Chung, Kristin Dew, Allison Cole, Jasmine Zia, James Fogarty, Julie A. Kientz, and Sean A. Munson. 2016. Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW '16). ACM, New York, NY, USA, 770--786. https://doi.org/10.1145/2818048.2819926
[18]
Christine Clar, K Barnard, Ewen Cummins, Pamela Royle, and NormanWaugh. 2010. Self-monitoring of blood glucose in type 2 diabetes: systematic review. In NIHR Health Technology Assessment programme: Executive Summaries. NIHR Journals Library.
[19]
Sunny Consolvo, Katherine Everitt, Ian Smith, and James A. Landay. 2006. Design Requirements for Technologies That Encourage Physical Activity. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '06). ACM, New York, NY, USA, 457--466. https://doi.org/10.1145/1124772.1124840
[20]
Karen Davis, Stephen C. Schoenbaum, and Anne-Marie Audet. 2005. A 2020 vision of patient-centered primary care. Journal of General Internal Medicine 20, 10 (Oct. 2005), 953--957. https://doi.org/10.1111/j.1525--1497.2005.0178.x
[21]
Pooja M Desai, Matthew E Levine, David J Albers, and Lena Mamykina. 2018. Pictures worth a thousand words: Reflections on visualizing personal blood glucose forecasts for individuals with type 2 diabetes. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. ACM, 538.
[22]
Pooja M. Desai, Elliot G. Mitchell, Maria L. Hwang, Matthew E. Levine, David J. Albers, and Lena Mamykina. 2019. Personal Health Oracle: Explorations of Personalized Predictions in Diabetes Self-Management. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (CHI '19). ACM, New York, NY, USA, Article 370, 13 pages. https://doi.org/10.1145/3290605.3300600 Proc. ACM Hum.-Comput. Interact., Vol. 4, No. CSCW2, Article 129. Publication date: October 2020. 129:20 Karthik S. Bhat & Neha Kumar
[23]
Xianghua Ding, Yunan Chen, Zhaofei Ding, and Yiwen Xu. 2019. Boundary Negotiation for Patient-Provider Communication via WeChat in China. Proc. ACM Hum.-Comput. Interact. 3, CSCW, Article Article 157 (Nov. 2019), 24 pages. https://doi.org/10.1145/3359259
[24]
Marie Ennis-O'Connor. 2018. What Does It Mean To Be An Empowered Patient? https://powerfulpatients.org/2018/ 05/22/what-does-it-mean-to-be-an-empowered-patient/
[25]
Daniel A. Epstein, Nicole B. Lee, Jennifer H. Kang, Elena Agapie, Jessica Schroeder, Laura R. Pina, James Fogarty, Julie A. Kientz, and Sean Munson. 2017. Examining Menstrual Tracking to Inform the Design of Personal Informatics Tools. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 6876--6888. https://doi.org/10.1145/3025453.3025635
[26]
Daniel A Epstein, An Ping, James Fogarty, and Sean A Munson. 2015. A lived informatics model of personal informatics. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing. ACM, 731--742.
[27]
Jordan Eschler, Zakariya Dehlawi, and Wanda Pratt. 2015. Self-Characterized Illness Phase and Information Needs of Participants in an Online Cancer Forum. In ICWSM.
[28]
Virginia Eubanks. 2018. Automating inequality: How high-tech tools profile, police, and punish the poor. St. Martin?s Press.
[29]
Susannah Fox and Maeve Duggan. 2013. Tracking for Health. Technical Report. Pew Research Center. https: //www.pewresearch.org/internet/2013/01/28/tracking-for-health/
[30]
M. M. Funnell, R. M. Anderson, M. S. Arnold, P. A. Barr, M. Donnelly, P. D. Johnson, D. Taylor-Moon, and N. H. White. 1991. Empowerment: an idea whose time has come in diabetes education. The Diabetes Educator 17, 1 (Feb. 1991), 37--41. https://doi.org/10.1177/014572179101700108
[31]
Ge Gao, Sun Young Hwang, Gabriel Culbertson, Susan R. Fussell, and Malte F. Jung. 2017. Beyond Information Content: The Effects of Culture on Affective Grounding in Instant Messaging Conversations. Proc. ACM Hum.-Comput. Interact. 1, CSCW, Article 48 (Dec. 2017), 18 pages. https://doi.org/10.1145/3134683
[32]
Nitin Goyal. 2018. What Patient Empowerment Really Means. https://healthcareinamerica.us/what-patientempowerment- really-means-and-how-digital-platforms-can-improve-the-physician-e368d1ea0bdd
[33]
Shefali Haldar, Sonali R. Mishra, Maher Khelifi, Ari H. Pollack, and Wanda Pratt. 2019. Beyond the Patient Portal: Supporting Needs of Hospitalized Patients. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (CHI '19). ACM, New York, NY, USA, Article 366, 14 pages. https://doi.org/10.1145/3290605.3300596
[34]
Andrea Hartzler and Wanda Pratt. 2011. Managing the personal side of health: how patient expertise differs from the expertise of clinicians. Journal of medical Internet research 13, 3 (2011), e62.
[35]
Jasmine Hentschel, Samyukta Manjayya Sherugar, Rui Zhou, Vaishnav Kameswaran, Rajesh Chandwani, and Neha Kumar. 2017. Rice Today, Roti Tomorrow: Diets and Diabetes in Urban Indian Households. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 4069--4081. https://doi.org/10.1145/3025453.3025656
[36]
Christian Holz and Edward J. Wang. 2017. Glabella: Continuously Sensing Blood Pressure Behavior Using an Unobtrusive Wearable Device. Proc. ACM Interact. Mob. Wearable Ubiquitous Technol. 1, 3 (2017), 23. https://doi.org/ 10.1145/3132024
[37]
Matthew K. Hong, Clayton Feustel, Meeshu Agnihotri, Max Silverman, Stephen F. Simoneaux, and Lauren Wilcox. 2017. Supporting Families in Reviewing and Communicating About Radiology Imaging Studies. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 5245--5256. https://doi.org/10.1145/3025453.3025754
[38]
Institute of Medicine (US) Committee on Quality of Health Care in America. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academies Press (US), Washington (DC). http://www.ncbi.nlm.nih. gov/books/NBK222274/
[39]
Azra Ismail, Naveena Karusala, and Neha Kumar. 2018. Bridging Disconnected Knowledges for Community Health. Proc. ACM Hum.-Comput. Interact. 2, CSCW, Article 75 (Nov. 2018), 27 pages. https://doi.org/10.1145/3274344
[40]
Maia L. Jacobs, James Clawson, and Elizabeth D. Mynatt. 2014. My Journey Compass: A Preliminary Investigation of a Mobile Tool for Cancer Patients. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '14). ACM, New York, NY, USA, 663--672. https://doi.org/10.1145/2556288.2557194
[41]
Maia L. Jacobs, James Clawson, and Elizabeth D. Mynatt. 2015. Comparing Health Information Sharing Preferences of Cancer Patients, Doctors, and Navigators. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW '15). ACM, New York, NY, USA, 808--818. https://doi.org/10.1145/ 2675133.2675252
[42]
Susan L Janson, KellyWong McGrath, Jack K Covington, Su-Chun Cheng, and Homer A Boushey. 2009. Individualized asthma self-management improves medication adherence and markers of asthma control. Journal of Allergy and Clinical Immunology 123, 4 (2009), 840--846. Proc. ACM Hum.-Comput. Interact., Vol. 4, No. CSCW2, Article 129. Publication date: October 2020. Sociocultural Dimensions of Tracking Health and Taking Care 129:21
[43]
Kamal Jethwani and Jodi Sperber. 2017. Who Gives Us the Right to 'Empower' Patients? Catalyst Carryover 3, 6 (2017). https://doi.org/10.1056/CAT.17.0300 arXiv:https://catalyst.nejm.org/doi/pdf/10.1056/CAT.17.0300
[44]
Ravi Karkar, Jessica Schroeder, Daniel A. Epstein, Laura R. Pina, Jeffrey Scofield, James Fogarty, Julie A. Kientz, Sean A. Munson, Roger Vilardaga, and Jasmine Zia. 2017. TummyTrials: A Feasibility Study of Using Self-Experimentation to Detect Individualized Food Triggers. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 6850--6863. https://doi.org/10.1145/3025453.3025480
[45]
Naveena Karusala, Apoorva Bhalla, and Neha Kumar. 2019. Privacy, Patriarchy, and Participation on Social Media. In Proceedings of the 2019 on Designing Interactive Systems Conference (DIS '19). ACM, New York, NY, USA, 511--526. https://doi.org/10.1145/3322276.3322355
[46]
Elizabeth Kaziunas, Mark S. Ackerman, Silvia Lindtner, and Joyce M. Lee. 2017. Caring Through Data: Attending to the Social and Emotional Experiences of Health Datafication. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW '17). ACM, New York, NY, USA, 2260--2272. https://doi.org/10.1145/2998181.2998303
[47]
Os Keyes. 2018. The misgendering machines: Trans/HCI implications of automatic gender recognition. Proceedings of the ACM on Human-Computer Interaction 2, CSCW (2018), 88.
[48]
Neha Kumar. 2015. The gender-technology divide or perceptions of non-use? First Monday 20, 11 (Nov. 2015). https://doi.org/10.5210/fm.v20i11.6300
[49]
Neha Kumar, Rajesh Chandwani, and Julie Kientz. 2019. Nurture: Assisted Pediatrics for Indian Parents. In Proceedings of the Tenth International Conference on Information and Communication Technologies and Development (ICTD '19). Association for Computing Machinery, New York, NY, USA, Article 12, 11 pages. https://doi.org/10.1145/3287098. 3287114
[50]
Ian Li, Anind Dey, and Jodi Forlizzi. 2010. A stage-based model of personal informatics systems. In Proceedings of the SIGCHI conference on human factors in computing systems. ACM, 557--566.
[51]
Ian Li, Anind K. Dey, and Jodi Forlizzi. 2011. Understanding My Data, Myself: Supporting Self-reflection with Ubicomp Technologies. In Proceedings of the 13th International Conference on Ubiquitous Computing (UbiComp '11). ACM, New York, NY, USA, 405--414. https://doi.org/10.1145/2030112.2030166
[52]
James J. Lin, Lena Mamykina, Silvia Lindtner, Gregory Delajoux, and Henry B. Strub. 2006. Fish'N'Steps: Encouraging Physical Activity with an Interactive Computer Game. In Proceedings of the 8th International Conference on Ubiquitous Computing (UbiComp'06). Springer-Verlag, Berlin, Heidelberg, 261--278. https://doi.org/10.1007/11853565_16
[53]
Deborah Lupton. 2014. Self-tracking Cultures: Towards a Sociology of Personal Informatics. In Proceedings of the 26th Australian Computer-Human Interaction Conference on Designing Futures: The Future of Design (OzCHI '14). ACM, New York, NY, USA, 77--86. https://doi.org/10.1145/2686612.2686623
[54]
Deborah Lupton. 2018. I Just Want It to Be Done, Done, Done! Food Tracking Apps, Affects, and Agential Capacities. Multimodal Technologies and Interaction 2, 2 (2018). https://doi.org/10.3390/mti2020029
[55]
Haley MacLeod, Grace Bastin, Leslie S. Liu, Katie Siek, and Kay Connelly. 2017. "Be Grateful You Don'T Have a Real Disease": Understanding Rare Disease Relationships. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 1660--1673. https://doi.org/10.1145/3025453.3025796
[56]
Cardiology Magazine. 2019. Patient Empowerment: Through the Eyes of Doctor and Patient. https://www.acc.org/ latest-in-cardiology/articles/2019/02/01/12/42/the-patients-voice
[57]
Alison Mathie and Gord Cunningham. 2003. From clients to citizens: Asset-based community development as a strategy for community-driven development. Development in practice 13, 5 (2003), 474--486.
[58]
Helena M. Mentis, Anita Komlodi, Katrina Schrader, Michael Phipps, Ann Gruber-Baldini, Karen Yarbrough, and Lisa Shulman. 2017. Crafting a View of Self-Tracking Data in the Clinical Visit. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 5800--5812. https://doi.org/10.1145/ 3025453.3025589
[59]
Sharan B. Merriam. 2002. Qualitative research in practice: Examples for discussion and analysis. Jossey-Bass Inc Pub.
[60]
Andrew D. Miller, Sonali R. Mishra, Logan Kendall, Shefali Haldar, Ari H. Pollack, and Wanda Pratt. 2016. Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW '16). ACM, New York, NY, USA, 756--769. https://doi.org/10.1145/2818048.2819983
[61]
Sonali R. Mishra, Shefali Haldar, Ari H. Pollack, Logan Kendall, Andrew D. Miller, Maher Khelifi, and Wanda Pratt. 2016. "Not Just a Receiver": Understanding Patient Behavior in the Hospital Environment. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). ACM, New York, NY, USA, 3103--3114. https://doi.org/10.1145/2858036.2858167
[62]
Sonali R. Mishra, Andrew D. Miller, Shefali Haldar, Maher Khelifi, Jordan Eschler, Rashmi G. Elera, Ari H. Pollack, and Wanda Pratt. 2018. Supporting Collaborative Health Tracking in the Hospital: Patients? Perspectives. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems (CHI '18). ACM, New York, NY, USA, Article 650, Proc. ACM Hum.-Comput. Interact., Vol. 4, No. CSCW2, Article 129. Publication date: October 2020. 129:22 Karthik S. Bhat & Neha Kumar 14 pages. https://doi.org/10.1145/3173574.3174224
[63]
Annemarie Mol. 2008. The logic of care: Health and the problem of patient choice. Routledge.
[64]
Jessica Morley and Luciano Floridi. 2019. The Limits of Empowerment: How to Reframe the Role of mHealth Tools in the Healthcare Ecosystem. Science and Engineering Ethics (June 2019). https://doi.org/10.1007/s11948-019-00115--1
[65]
Vivian Genaro Motti. 2019. Wearable Health: Opportunities and Challenges. In Proceedings of the 13th EAI International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth'19). ACM, New York, NY, USA, 356-- 359. https://doi.org/10.1145/3329189.3329226
[66]
Elizabeth L. Murnane, Jaime Snyder, Stephen Voida, Matthew J. Bietz, Mark Matthews, Sean Munson, and Laura R. Pina. 2018. Social Issues in Personal Informatics: Design, Data, and Infrastructure. In Companion of the 2018 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW '18). ACM, New York, NY, USA, 471--478. https://doi.org/10.1145/3272973.3273016
[67]
Elizabeth L. Murnane, Tara G. Walker, Beck Tench, Stephen Voida, and Jaime Snyder. 2018. Personal Informatics in Interpersonal Contexts: Towards the Design of Technology That Supports the Social Ecologies of Long-Term Mental Health Management. Proc. ACM Hum.-Comput. Interact. 2, CSCW, Article 127 (Nov. 2018), 27 pages. https: //doi.org/10.1145/3274396
[68]
Meena Natarajan and Tapan Parikh. 2013. Understanding Barriers to Information Access and Disclosure for HIV+ Women. In Proceedings of the Sixth International Conference on Information and Communication Technologies and Development: Full Papers - Volume 1 (ICTD '13). Association for Computing Machinery, New York, NY, USA, 143-152. https://doi.org/10.1145/2516604.2516627
[69]
Francisco Nunes and Geraldine Fitzpatrick. 2018. Understanding the Mundane Nature of Self-care: Ethnographic Accounts of People Living with Parkinson's. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems (CHI '18). ACM, New York, NY, USA, Article 402, 15 pages. https://doi.org/10.1145/3173574.3173976
[70]
Francisco Nunes, Nervo Verdezoto, Geraldine Fitzpatrick, Morten Kyng, Erik Grönvall, and Cristiano Storni. 2015. Self-Care Technologies in HCI: Trends, Tensions, and Opportunities. ACM Trans. Comput.-Hum. Interact. 22, 6, Article 33 (Dec. 2015), 45 pages. https://doi.org/10.1145/2803173
[71]
World Health Organization. 1998. Health Promotion Glossary. (1998), 36.
[72]
Sun Young Park and Yunan Chen. 2016. Design Opportunities for Supporting Patient Information Needs During an Emergency Visit. In Proceedings of the 10th EAI International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth '16). ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering), ICST, Brussels, Belgium, Belgium, 17--24. http://dl.acm.org/citation.cfm?id=3021319.3021323
[73]
Sun Young Park, Yunan Chen, and Shriti Raj. 2017. Beyond Health Literacy: Supporting Patient-Provider Communication during an Emergency Visit. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW '17). Association for Computing Machinery, New York, NY, USA, 2179-2192. https://doi.org/10.1145/2998181.2998357
[74]
Laura R. Pina, Sang-Wha Sien, Teresa Ward, Jason C. Yip, Sean A. Munson, James Fogarty, and Julie A. Kientz. 2017. From Personal Informatics to Family Informatics: Understanding Family Practices Around Health Monitoring. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW '17). ACM, New York, NY, USA, 2300--2315. https://doi.org/10.1145/2998181.2998362
[75]
Kathleen H. Pine, Claus Bossen, Yunan Chen, Gunnar Ellingsen, Miria Grisot, Melissa Mazmanian, and Naja Holten Møller. 2018. Data Work in Healthcare: Challenges for Patients, Clinicians and Administrators. In Companion of the 2018 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW '18). Association for Computing Machinery, New York, NY, USA, 433-439. https://doi.org/10.1145/3272973.3273017
[76]
Enrico Maria Piras and Francesco Miele. 2017. Clinical self-tracking and monitoring technologies: negotiations in the ICT-mediated patient-provider relationship. Health Sociology Review 26, 1 (Jan. 2017), 38--53. https: //doi.org/10.1080/14461242.2016.1212316
[77]
Ari H. Pollack, Uba Backonja, Andrew D. Miller, Sonali R. Mishra, Maher Khelifi, Logan Kendall, and Wanda Pratt. 2016. Closing the Gap: Supporting Patients? Transition to Self-Management After Hospitalization. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). ACM, New York, NY, USA, 5324--5336. https://doi.org/10.1145/2858036.2858240
[78]
Aare Puussaar, Adrian K. Clear, and PeterWright. 2017. Enhancing Personal Informatics Through Social Sensemaking. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 6936--6942. https://doi.org/10.1145/3025453.3025804
[79]
Shriti Raj, Kelsey Toporski, Ashley Garrity, Joyce M. Lee, and Mark W. Newman. 2019. "My Blood Sugar is Higher on the Weekends": Finding a Role for Context and Context-Awareness in the Design of Health Self-Management Technology. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (CHI '19). ACM, New York, NY, USA, 119:1--119:13. https://doi.org/10.1145/3290605.3300349 event-place: Glasgow, Scotland Uk. Proc. ACM Hum.-Comput. Interact., Vol. 4, No. CSCW2, Article 129. Publication date: October 2020. Sociocultural Dimensions of Tracking Health and Taking Care 129:23
[80]
Fateme Rajabiyazdi, Charles Perin, Jo Vermeulen, Haley MacLeod, Diane Gromala, and Sheelagh Carpendale. 2017. Differences That Matter: In-clinic Communication Challenges. In Proceedings of the 11th EAI International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth '17). ACM, New York, NY, USA, 251--260. https://doi.org/10.1145/3154862.3154885
[81]
John Rooksby, Mattias Rost, Alistair Morrison, and Matthew Chalmers. 2014. Personal Tracking As Lived Informatics. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '14). ACM, New York, NY, USA, 1163--1172. https://doi.org/10.1145/2556288.2557039
[82]
Igor Sacramento and Vanissa Wanick. 2017. mHealth and the Digital Cyborg Body: The Running Apps in a Society of Control. In Mobile e-Health, Hannah R. Marston, Shannon Freeman, and Charles Musselwhite (Eds.). Springer International Publishing, Cham, 39--70. https://doi.org/10.1007/978--3--319--60672--9_3
[83]
Nithya Sambasivan, Garen Checkley, Amna Batool, Nova Ahmed, David Nemer, Laura Sanely Gaytán-Lugo, Tara Matthews, Sunny Consolvo, and Elizabeth Churchil. 2018. "Privacy is Not for Me, It's for Those Rich Women": Performative Privacy Practices on Mobile Phones by Women in South Asia. In Proceedings of the Fourteenth USENIX Conference on Usable Privacy and Security (SOUPS '18). USENIX Association, Berkeley, CA, USA, 127--142. http: //dl.acm.org/citation.cfm?id=3291228.3291240
[84]
Marén Schorch, Lin Wan, David William Randall, and Volker Wulf. 2016. Designing for Those Who Are Overlooked: Insider Perspectives on Care Practices and Cooperative Work of Elderly Informal Caregivers. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW '16). ACM, New York, NY, USA, 787--799. https://doi.org/10.1145/2818048.2819999
[85]
Irving Seidman. 2006. Interviewing as qualitative research: A guide for researchers in education and the social sciences. Teachers college press.
[86]
Amartya Sen. 2001. Development as Freedom. Oxford Paperbacks.
[87]
Yedendra B. Shrinivasan, Mohit Jain, Deva P. Seetharam, Abhishek Choudhary, Elaine M. Huang, Tawanna Dillahunt, and Jennifer Mankoff. 2013. Deep Conservation in Urban India and Its Implications for the Design of Conservation Technologies. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '13). ACM, New York, NY, USA, 1969--1978. https://doi.org/10.1145/2470654.2466261
[88]
Thor Jarle J. Skinstad and Babak A. Farshchian. 2016. Empowerment or Concealed Compliance?: A Review of Literature on Mobile ICT Solutions for Patient Empowerment. In Proceedings of the 9th ACM International Conference on PErvasive Technologies Related to Assistive Environments (PETRA '16). ACM, New York, NY, USA, Article 54, 4 pages. https://doi.org/10.1145/2910674.2910710
[89]
V. Sujatha. 2007. Pluralism in Indian medicine: Medical lore as a genre of medical knowledge. Contributions to Indian Sociology 41, 2 (2007), 169--202. https://doi.org/10.1177/006996670704100202 arXiv:https://doi.org/10.1177/006996670704100202
[90]
Sharifa Sultana, Syed Ishtiaque Ahmed, and Susan R. Fussell. 2019. "Parar-daktar Understands My Problems Better": Disentangling the Challenges to Designing Better Access to Healthcare in Rural Bangladesh. Proc. ACM Hum.-Comput. Interact. 3, CSCW, Article 168 (Nov. 2019), 27 pages. https://doi.org/10.1145/3359270
[91]
Matthieu Tixier and Myriam Lewkowicz. 2016. "Counting on the Group": Reconciling Online and Offline Social Support Among Older Informal Caregivers. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). ACM, New York, NY, USA, 3545--3558. https://doi.org/10.1145/2858036.2858477
[92]
Ma. Dolores Tongco. 2007. Purposive Sampling as a Tool for Informant Selection. Ethnobotany Research and Applications 5, 0 (2007), 147--158. http://journals.sfu.ca/era/index.php/era/article/view/126
[93]
Tammy Toscos, Kay Connelly, and Yvonne Rogers. 2012. Best Intentions: Health Monitoring Technology and Children. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '12). Association for Computing Machinery, New York, NY, USA, 1431-1440. https://doi.org/10.1145/2207676.2208603
[94]
Anupriya Tuli, Shaan Chopra, Neha Kumar, and Pushpendra Singh. 2018. Learning from and with Menstrupedia: Towards Menstrual Health Education in India. Proc. ACM Hum.-Comput. Interact. 2, CSCW, Article 174 (Nov. 2018), 20 pages. https://doi.org/10.1145/3274443
[95]
Lisa M Vizer, Jordan Eschler, Bonmi Koo, James Ralston, Wanda Pratt, and Sean A. Munson. 2019. "It's not just technology, it's people": A Conceptual Model of Shared Health Informatics for Chronic Illness. Journal of Medical Internet Research 21 (2019). Issue 4.
[96]
Edward Jay Wang, Junyi Zhu, Mohit Jain, Tien-Jui Lee, Elliot Saba, Lama Nachman, and Shwetak N. Patel. 2018. Seismo: Blood Pressure Monitoring Using Built-in Smartphone Accelerometer and Camera. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems (CHI '18). ACM, New York, NY, USA, 425:1--425:9. https://doi.org/10.1145/3173574.3173999
[97]
WebMD. [n.d.]. Atherosclerosis. https://www.webmd.com/heart-disease/what-is-atherosclerosis
[98]
WebMD. [n.d.]. What is rheumatic heart disease? https://www.webmd.com/heart-disease/heart-failure/qa/what-isrheumatic- heart-disease Proc. ACM Hum.-Comput. Interact., Vol. 4, No. CSCW2, Article 129. Publication date: October 2020. 129:24 Karthik S. Bhat & Neha Kumar
[99]
Peter West, Richard Giordano, Max Van Kleek, and Nigel Shadbolt. 2016. The Quantified Patient in the Doctor's Office: Challenges & Opportunities. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). ACM, New York, NY, USA, 3066--3078. https://doi.org/10.1145/2858036.2858445
[100]
Sarah Myers West, Meredith Whittaker, and Kate Crawford. 2019. Discriminating Systems: Gender, Race, and Power in AI. AI Now Institute (April 2019), 33. https://ainowinstitute.org/discriminatingsystems.pdf
[101]
Alyson L. Young and Andrew D. Miller. 2019. "This Girl is on Fire": Sensemaking in an Online Health Community for Vulvodynia. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (CHI '19). ACM, New York, NY, USA, Article 129, 13 pages. https://doi.org/10.1145/3290605.3300359
[102]
Ellen Zegura, Carl DiSalvo, and Amanda Meng. 2018. Care and the Practice of Data Science for Social Good. In Proceedings of the 1st ACM SIGCAS Conference on Computing and Sustainable Societies (COMPASS '18). ACM, New York, NY, USA, Article 34, 9 pages. https://doi.org/10.1145/3209811.3209877
[103]
Haining Zhu, Joanna Colgan, Madhu Reddy, and Eun Kyoung Choe. 2016. Sharing Patient-Generated Data in Clinical Practices: An Interview Study. AMIA ... Annual Symposium proceedings / AMIA Symposium. AMIA Symposium 2016 (1 1 2016), 1303--1312.
[104]
Shoshana Zuboff. 2019. The age of surveillance capitalism: The fight for a human future at the new frontier of power. Profile Books.

Cited By

View all
  • (2025)Meeting People Where They Are: Building Community-Centered Care with Smartphone-Facilitated Response to OverdosesProceedings of the ACM on Human-Computer Interaction10.1145/37012009:1(1-23)Online publication date: 10-Jan-2025
  • (2024)Wearable Activity Trackers: A Survey on Utility, Privacy, and SecurityACM Computing Surveys10.1145/364509156:7(1-40)Online publication date: 8-Feb-2024
  • (2024)Understanding the Technology-Mediated Home Phlebotomy Ecosystem in IndiaProceedings of the ACM on Human-Computer Interaction10.1145/36374218:CSCW1(1-26)Online publication date: 26-Apr-2024
  • Show More Cited By

Index Terms

  1. Sociocultural Dimensions of Tracking Health and Taking Care

    Recommendations

    Comments

    Information & Contributors

    Information

    Published In

    cover image Proceedings of the ACM on Human-Computer Interaction
    Proceedings of the ACM on Human-Computer Interaction  Volume 4, Issue CSCW2
    CSCW
    October 2020
    2310 pages
    EISSN:2573-0142
    DOI:10.1145/3430143
    Issue’s Table of Contents
    Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]

    Publisher

    Association for Computing Machinery

    New York, NY, United States

    Publication History

    Published: 15 October 2020
    Published in PACMHCI Volume 4, Issue CSCW2

    Permissions

    Request permissions for this article.

    Check for updates

    Author Tags

    1. datafication
    2. hci4d
    3. healthcare
    4. patient empowerment
    5. qualitative

    Qualifiers

    • Research-article

    Contributors

    Other Metrics

    Bibliometrics & Citations

    Bibliometrics

    Article Metrics

    • Downloads (Last 12 months)132
    • Downloads (Last 6 weeks)11
    Reflects downloads up to 18 Jan 2025

    Other Metrics

    Citations

    Cited By

    View all
    • (2025)Meeting People Where They Are: Building Community-Centered Care with Smartphone-Facilitated Response to OverdosesProceedings of the ACM on Human-Computer Interaction10.1145/37012009:1(1-23)Online publication date: 10-Jan-2025
    • (2024)Wearable Activity Trackers: A Survey on Utility, Privacy, and SecurityACM Computing Surveys10.1145/364509156:7(1-40)Online publication date: 8-Feb-2024
    • (2024)Understanding the Technology-Mediated Home Phlebotomy Ecosystem in IndiaProceedings of the ACM on Human-Computer Interaction10.1145/36374218:CSCW1(1-26)Online publication date: 26-Apr-2024
    • (2024)Examining the Social Aspects of Pregnancy Tracking ApplicationsProceedings of the ACM on Human-Computer Interaction10.1145/36373288:CSCW1(1-30)Online publication date: 26-Apr-2024
    • (2024)Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With DementiaProceedings of the ACM on Human-Computer Interaction10.1145/36373258:CSCW1(1-34)Online publication date: 26-Apr-2024
    • (2024)Platforming PCOS Treatment Online: FemTech Logics of CareProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642882(1-18)Online publication date: 11-May-2024
    • (2024)Unpacking the Lived Experience of Collaborative Pregnancy TrackingProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642652(1-17)Online publication date: 11-May-2024
    • (2024)"Unrest and trauma stays with you!": Navigating mental health and professional service-seeking in KashmirProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642507(1-17)Online publication date: 11-May-2024
    • (2024)A Panoramic View of Socio-Cultural Sensitivity in Digital Technologies: A Comprehensive Review and Future DirectionsInternational Journal of Human–Computer Interaction10.1080/10447318.2024.2372135(1-29)Online publication date: 11-Jul-2024
    • (2023)Understanding the Socio-cultural Challenges and Opportunities for Affordable Wearables to Support Post-Stroke Upper-Limb Rehabilitation: A Qualitative Study (Preprint)JMIR Rehabilitation and Assistive Technologies10.2196/54699Online publication date: 19-Nov-2023
    • Show More Cited By

    View Options

    Login options

    Full Access

    View options

    PDF

    View or Download as a PDF file.

    PDF

    eReader

    View online with eReader.

    eReader

    Media

    Figures

    Other

    Tables

    Share

    Share

    Share this Publication link

    Share on social media