Advocating Values through Meaningful Participation: Introducing a Method to Elicit and Analyze Values for Enriching Data Donation Practices in Healthcare
Article No.: 16, Pages 1 - 32
Abstract
The secondary use of routinely collected patient data made possible by the broad consent form is seen as a prerequisite for developing data-driven health technologies. In Germany, relevant stakeholder groups (e.g., ethics committees and data protection authorities) specified the broad consent form; however, only one group of patient representatives was consulted, which may indicate asymmetries in engagement. This situation informed our research on medical data donation and emphasized foregrounding patient values. Drawing on participatory design, value sensitive design, and emerging research on value-led participation, we propose a method consisting of (1) a workshop concept for participatory value elicitation composed of four carefully coordinated phases and (2) an analysis procedure to examine the empirical data collected. This analysis allowed us to derive design requirements for medical data donation user interfaces. We conducted three workshops with patient advocates of vulnerable groups and patients in residential care of a psychosomatic unit. Our findings provide new directions to improve user interfaces for medical data donation: First, user interfaces need to enhance patients' reflective thinking about the potential consequences of their data donation; second, a decision facilitator supporting patients' value-based decision-making (e.g., by providing simple language or tailoring descriptions to patient needs); and finally, a data intermediary relieving patients' decision-making and giving them control over their data after donation. Moreover, we emphasize the need to increase the use of participatory approaches in health technology development.
References
[1]
Brenda Almond and Bryan R. Wilson. 1988. Values: A Symposium. (1988).
[2]
Taghreed Alshehri, Reuben Kirkham, and Patrick Olivier. 2020. Scenario Co-Creation Cards: A Culturally Sensitive Tool for Eliciting Values. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, Honolulu, HI, USA, 1--14. https://doi.org/10.1145/3313831.3376608
[3]
Liam Bannon, Jeffrey Bardzell, and Susanne Bødker. 2018. Reimagining Participatory Design. Interactions, Vol. 26, 1 (2018), 26--32. https://doi.org/10.1145/3292015
[4]
Liam J. Bannon. 1995. From Human Factors to Human Actors: The Role of Psychology and Human-Computer Interaction Studies in System Design. In Readings in Human-Computer Interaction. Elsevier, 205--214.
[5]
Liam J. Bannon, Pelle Ehn, Jesper Simonsen, and Toni Robertson. 2012. Routledge International Handbook of Participatory Design.
[6]
Samuel Barnett, Nico Brand, William Odom, and Kaitlyn Andres. 2022. Exploring Data Intermediaries as Infrastructure for a Human-Centric Data Economy: Speculations & Critical Reflections. In Nordic Human-Computer Interaction Conference. Association for Computing Machinery, New York, NY, USA, Article 83, 20 pages. https://doi.org/10.1145/3546155.3547286
[7]
Eric P. S. Baumer. 2015. Reflective Informatics: Conceptual Dimensions for Designing Technologies of Reflection. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 585--594. https://doi.org/10.1145/2702123.2702234
[8]
Marit Bentvelzen, Paweł W. Wo'zniak, Pia S. F. Herbes, Evropi Stefanidi, and Jasmin Niess. 2022. Revisiting Reflection in HCI: Four Design Resources for Technologies That Support Reflection. Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies, Vol. 6, 1, Article 2 (2022), 27 pages. https://doi.org/10.1145/3517233
[9]
Andrew B. L. Berry, Catherine Y. Lim, Calvin A. Liang, Andrea L. Hartzler, Tad Hirsch, Dawn M. Ferguson, Zoë A. Bermet, and James D. Ralston. 2021. Supporting Collaborative Reflection on Personal Values and Health. Proceedings of the ACM Human-Computer Interaction, Vol. 5, Article 299 (2021), 39 pages. https://doi.org/10.1145/3476040
[10]
Susanne Bødker and Samuli Pekkola. 2010. Introduction the Debate Section: A Short Review to the Past and Present of Participatory Design. Scandinavian Journal of Information Systems, Vol. 22, 1 (2010), 4.
[11]
Alan Borning and Michael Muller. 2012. Next Steps for Value Sensitive Design. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1125--1134. https://doi.org/10.1145/2207676.2208560
[12]
David Boud, Rosemary Keogh, and David Walker. 2013. Reflection: Turning Experience into Learning. Taylor & Francis, London, UK.
[13]
John M. Carroll. 1999. Five Reasons for Scenario-Based Design. In Proceedings of the Thirty-Second Annual Hawaii International Conference on System Sciences, Vol. 3. IEEE Computer Society, USA, 3051.
[14]
An-Shou Cheng and Kenneth R. Fleischmann. 2010. Developing a Meta-Inventory of Human Values. Proceedings of the American Society for Information Science and Technology, Vol. 47, 1 (2010), 1--10. https://doi.org/10.1002/meet.14504701232
[15]
Janghee Cho, Tian Xu, Abigail Zimmermann-Niefield, and Stephen Voida. 2022. Reflection in Theory and Reflection in Practice: An Exploration of the Gaps in Reflection Support among Personal Informatics Apps. In Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, Article 142, 23 pages. https://doi.org/10.1145/3491102.3501991
[16]
Yngve Dahl and Kshitij Sharma. 2022. Six Facets of Facilitation: Participatory Design Facilitators' Perspectives on Their Role and Its Realization. In Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, Article 484, 14 pages. https://doi.org/10.1145/3491102.3502013
[17]
Jennifer L. Davidson and Carlos Jensen. 2013. Participatory Design with Older Adults: An Analysis of Creativity in the Design of Mobile Healthcare Applications. In Proceedings of the 9th ACM Conference on Creativity & Cognition. Association for Computing Machinery, New York, NY, USA, 114--123. https://doi.org/10.1145/2466627.2466652
[18]
Tamara Denning, Alan Borning, Batya Friedman, Brian T. Gill, Tadayoshi Kohno, and William H. Maisel. 2010. Patients, Pacemakers, and Implantable Defibrillators: Human Values and Security for Wireless Implantable Medical Devices. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 917--926. https://doi.org/10.1145/1753326.1753462
[19]
Christoph F. Dietrich and Petra Riemer-Hommel. 2012. Challenges for the German Health Care System. Zeitschrift für Gastroenterologie, Vol. 50, 06 (2012), 557--572. https://doi.org/10.1055/s-0032--1312742
[20]
Verena Distler, Matthias Fassl, Hana Habib, Katharina Krombholz, Gabriele Lenzini, Carine Lallemand, Lorrie Faith Cranor, and Vincent Koenig. 2021. A Systematic Literature Review of Empirical Methods and Risk Representation in Usable Privacy and Security Research. Proceedings of the ACM on Human-Computer Interaction, Vol. 28, 6, Article 43 (2021), 50 pages. https://doi.org/10.1145/3469845
[21]
Marie Ertner, Anne Mie Kragelund, and Lone Malmborg. 2010. Five Enunciations of Empowerment in Participatory Design. In Proceedings of the 11th Biennial Participatory Design Conference. Association for Computing Machinery, New York, NY, USA, 191--194. https://doi.org/10.1145/1900441.1900475
[22]
Kenneth R. Fleischmann. 2013. Information and Human Values. Synthesis Lectures on Information Concepts, Retrieval, and Services, Vol. 5, 5 (2013), 1--99.
[23]
Sarah Foley, Daniel Welsh, Nadia Pantidi, Kellie Morrissey, Tom Nappey, and John McCarthy. 2019. Printer Pals: Experience-Centered Design to Support Agency for People with Dementia. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1--13. https://doi.org/10.1145/3290605.3300634
[24]
Daniel Franzen, Saskia Nu nez von Voigt, Peter Sörries, Florian Tschorsch, and Claudia Müller-Birn. 2022. Am I Private and If So, How Many? Communicating Privacy Guarantees of Differential Privacy with Risk Communication Formats. In Proceedings of the 2022 ACM SIGSAC Conference on Computer and Communications Security. Association for Computing Machinery, New York, NY, USA, 1125--1139. https://doi.org/10.1145/3548606.3560693
[25]
Christopher Frauenberger, Judith Good, Geraldine Fitzpatrick, and Ole Sejer Iversen. 2015. In Pursuit of Rigour and Accountability in Participatory Design. International Journal of Human-Computer Studies, Vol. 74, C (2015), 93--106. https://doi.org/10.1016/j.ijhcs.2014.09.004
[26]
Batya Friedman. 1996. Value-Sensitive Design. Interactions, Vol. 3, 6 (1996), 16--23. https://doi.org/10.1145/242485.242493
[27]
Batya Friedman and David Hendry. 2012. The Envisioning Cards: A Toolkit for Catalyzing Humanistic and Technical Imaginations. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1145--1148. https://doi.org/10.1145/2207676.2208562
[28]
Batya Friedman and David G. Hendry. 2019. Value Sensitive Design: Shaping Technology with Moral Imagination. MIT Press, Cambridge, MA, USA.
[29]
Batya Friedman, David G. Hendry, and Alan Borning. 2017. A Survey of Value Sensitive Design Methods. Foundations and Trends® in Human-Computer Interaction, Vol. 11, 2 (2017), 63--125. https://doi.org/10.1561/1100000015
[30]
Batya Friedman, David Hurley, Daniel C. Howe, Helen Nissenbaum, and Edward Felten. 2002. Users' Conceptions of Risks and Harms on the Web: A Comparative Study. In CHI '02 Extended Abstracts on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 614--615. https://doi.org/10.1145/506443.506510
[31]
Batya Friedman, Peter H. Kahn, Jennifer Hagman, and Rachel L. Severson. 2005. Coding Manual for “The Watcher and The Watched: Social Judgments about Privacy in a Public Place”. (2005), 36.
[32]
Simon Geller, Sebastian Müller, Simon Scheider, Christiane Woopen, and Sven Meister. 2022. Value-based Consent Model: A Design Thinking Approach for Enabling Informed Consent in Medical Data Research. In Proceedings of the 15th International Joint Conference on Biomedical Engineering Systems and Technologies -- HEALTHINF. INSTICC, SciTePress, 81--92. https://doi.org/10.5220/0010828000003123
[33]
Alejandra Gomez Ortega, Jacky Bourgeois, and Gerd Kortuem. 2021. Towards Designerly Data Donation. In Adjunct Proceedings of the 2021 ACM International Joint Conference on Pervasive and Ubiquitous Computing and Proceedings of the 2021 ACM International Symposium on Wearable Computers. Association for Computing Machinery, New York, NY, USA, 496--501. https://doi.org/10.1145/3460418.3479362
[34]
Erik Grönvall, Lone Malmborg, and Jörn Messeter. 2016. Negotiation of Values as Driver in Community-Based PD. In Proceedings of the 14th Participatory Design Conference: Full Papers - Volume 1. Association for Computing Machinery, New York, NY, USA, 41--50. https://doi.org/10.1145/2940299.2940308
[35]
Hana Habib, Yixin Zou, Yaxing Yao, Alessandro Acquisti, Lorrie Cranor, Joel Reidenberg, Norman Sadeh, and Florian Schaub. 2021. Toggles, Dollar Signs, and Triangles: How to (In)Effectively Convey Privacy Choices with Icons and Link Texts. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, Article 63, 25 pages. https://doi.org/10.1145/3411764.3445387
[36]
Kim Halskov and Nicolai Brodersen Hansen. 2015. The Diversity of Participatory Design Research Practice at PDC 2002--2012. International Journal of Human-Computer Studies, Vol. 74 (2015), 81--92. https://doi.org/10.1016/j.ijhcs.2014.09.003
[37]
Christina N. Harrington, Katya Borgos-Rodriguez, and Anne Marie Piper. 2019. Engaging Low-Income African American Older Adults in Health Discussions through Community-Based Design Workshops. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1--15. https://doi.org/10.1145/3290605.3300823
[38]
Bjørn Hofmann. 2009. Broadening Consenttextemdashand Diluting Ethics? Journal of Medical Ethics, Vol. 35, 2 (2009), 125--129. https://doi.org/10.1136/jme.2008.024851
[39]
Juhani Iivari, Hannakaisa Isomäki, and Samuli Pekkola. 2010. The User -- The Great Unknown of Systems Development: Reasons, Forms, Challenges, Experiences and Intellectual Contributions of User Involvement. Information Systems Journal, Vol. 20, 2 (2010), 109--117. https://doi.org/10.1111/j.1365--2575.2009.00336.x
[40]
Ole Sejer Iversen, Kim Halskov, and Tuck Wah Leong. 2010. Rekindling Values in Participatory Design. In Proceedings of the 11th Biennial Participatory Design Conference. Association for Computing Machinery, New York, NY, USA, 91--100. https://doi.org/10.1145/1900441.1900455
[41]
Ole Sejer Iversen, Kim Halskov, and Tuck W. Leong. 2012. Values-Led Participatory Design. CoDesign, Vol. 8, 2--3 (2012), 87--103. https://doi.org/10.1080/15710882.2012.672575
[42]
Ole Sejer Iversen and Tuck W. Leong. 2012. Values-Led Participatory Design: Mediating the Emergence of Values. In Proceedings of the 7th Nordic Conference on Human-Computer Interaction: Making Sense Through Design. Association for Computing Machinery, New York, NY, USA, 468--477. https://doi.org/10.1145/2399016.2399087
[43]
Nassim JafariNaimi, Lisa Nathan, and Ian Hargraves. 2015. Values as Hypotheses: Design, Inquiry, and the Service of Values. Design Issues, Vol. 31 (2015), 91--104. https://doi.org/10.1162/DESI_a_00354
[44]
Heleen Janssen and Jatinder Singh. 2022. The Data Intermediary. Internet Policy Review, Vol. 11, 1 (2022), 9 pages. https://doi.org/10.14763/2022.1.1644
[45]
Rebecca M. Jonas and Benjamin V. Hanrahan. 2022. Designing for Shared Values: Exploring Ethical Dilemmas of Conducting Values Inclusive Design Research. Proceeding of the ACM on Human-Computer Interaction, Vol. 6, CSCW2, Article 291 (2022), 20 pages. https://doi.org/10.1145/3555182
[46]
Peter H. Kahn, Batya Friedman, and Irene S. Alexander. 2005. Coding Manual for “The Distant Gardener: What Conversations in the Telegarden Reveal about the User Experience of Human-Telerobotic Interaction”. UW Information School Technical Report IS-TR-2005-06-01. The Information School, University of Washington, Seattle, WA, USA.
[47]
Joss Langford, A. Poikola, Wil Janssen, Viivi L"ahteenoja, and Marlies Rikken. 2020. Understanding MyData Operators. MyData Global (2020). https://mydata. org/wpcontent/uploads/sites/5/2020/04/Understanding-Mydata-Operators-pages.pdf
[48]
Christopher A. Le Dantec, Erika Shehan Poole, and Susan P. Wyche. 2009. Values as Lived Experience: Evolving Value Sensitive Design in Support of Value Discovery. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1141--1150. https://doi.org/10.1145/1518701.1518875
[49]
Yew Kong Lee, Wah Yun Low, and Chirk Jenn Ng. 2013. Exploring Patient Values in Medical Decision Making: A Qualitative Study. PLOS ONE, Vol. 8, 11 (2013), 1--9. https://doi.org/10.1371/journal.pone.0080051
[50]
Tuck Wah Leong and Ole Sejer Iversen. 2015. Values-Led Participatory Design as a Pursuit of Meaningful Alternatives. In Proceedings of the Annual Meeting of the Australian Special Interest Group for Computer Human Interaction. Association for Computing Machinery, New York, NY, USA, 314--323. https://doi.org/10.1145/2838739.2838784
[51]
Catherine Y. Lim, Andrew B.L. Berry, Andrea L. Hartzler, Tad Hirsch, David S. Carrell, Zoë A. Bermet, and James D. Ralston. 2019. Facilitating Self-Reflection about Values and Self-Care Among Individuals with Chronic Conditions. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. ACM, Glasgow, SC, UK, 1--12. https://doi.org/10.1145/3290605.3300885
[52]
John W. Maloy and Pat F. Bass. 2020. Understanding Broad Consent. Ochsner Journal, Vol. 20, 1 (2020), 81--86. https://doi.org/10.31486/toj.19.0088
[53]
Philipp Mayring. 2014. Qualitative Content Analysis -- Theoretical Foundation, Basic Procedures and Software Solution. Klagenfurt. 143 pages. https://nbn-resolving.org/urn:nbn:de:0168-ssoar-395173
[54]
John McCarthy and Peter Wright. 2015. Taking [A]Part: The Politics and Aesthetics of Participation in Experience-Centered Design. The MIT Press.
[55]
Nora McDonald, Karla Badillo-Urquiola, Morgan G. Ames, Nicola Dell, Elizabeth Keneski, Manya Sleeper, and Pamela J. Wisniewski. 2020. Privacy and Power: Acknowledging the Importance of Privacy Research and Design for Vulnerable Populations. In Extended Abstracts of the 2020 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1--8. https://doi.org/10.1145/3334480.3375174
[56]
Nora McDonald and Andrea Forte. 2020. The Politics of Privacy Theories: Moving from Norms to Vulnerabilities. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1--14. https://doi.org/10.1145/3313831.3376167
[57]
Nick Merrill. 2020. Security Fictions: Bridging Speculative Design and Computer Security. Association for Computing Machinery, New York, NY, USA, 1727--1735. https://doi.org/10.1145/3357236.3395451
[58]
Michael Muller. 2014. Whose Values? Whose Design?. In Proceedings of the Conference on Computer Supported Cooperative Work & Social Computing Workshop on Co-Creating and Identity-Making. Baltimore, MD, USA.
[59]
Michael J. Muller and Sarah Kuhn. 1993. Participatory Design. Commun. ACM, Vol. 36, 6 (1993), 24--28. https://doi.org/10.1145/153571.255960
[60]
Lisa P. Nathan, Batya Friedman, Predrag Klasnja, Shaun K. Kane, and Jessica K. Miller. 2008. Envisioning Systemic Effects on Persons and Society throughout Interactive System Design. In Proceedings of the 7th ACM Conference on Designing Interactive Systems. Association for Computing Machinery, New York, NY, USA, 1--10. https://doi.org/10.1145/1394445.1394446
[61]
Lisa P. Nathan, Predrag V. Klasnja, and Batya Friedman. 2007. Value Scenarios: A Technique for Envisioning Systemic Effects of New Technologies. In CHI '07 Extended Abstracts on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 2585--2590. https://doi.org/10.1145/1240866.1241046
[62]
Donald A. Norman and Stephen W. Draper. 1986. User Centered System Design: New Perspectives on Human-Computer Interaction. Lawrence Erlbaum Associates, Hillsdale, NJ, USA, 31--61.
[63]
Giovanna Nunes Vilaza, Raju Maharjan, David Coyle, and Jakob Bardram. 2020. Futures for Health Research Data Platforms From the Participants' Perspectives. In Proceedings of the 11th Nordic Conference on Human-Computer Interaction: Shaping Experiences, Shaping Society. Association for Computing Machinery, New York, NY, USA, Article 39, 14 pages. https://doi.org/10.1145/3419249.3420110
[64]
Firaz Peer. 2022. A Participatory Approach to Eliciting Local Values of Civic Data Justice. In Proceedings of the Participatory Design Conference 2022, Vol. 1. Association for Computing Machinery, New York, NY, USA, 147--157. https://doi.org/10.1145/3536169.3537788
[65]
Kenneth D. Pimple. 2002. Six Domains of Research Ethics: A Heuristic Framework for the Responsible Conduct of Research. Science and Engineering Ethics, Vol. 8, 2 (2002), 191--205. https://doi.org/10.1007/s11948-002-0018--1
[66]
Darius A. Rohani, Nanna Tuxen, Andrea Quemada Lopategui, Maria Faurholt-Jepsen, Lars V. Kessing, and Jakob E. Bardram. 2019. Personalizing Mental Health: A Feasibility Study of a Mobile Behavioral Activation Tool for Depressed Patients. Proceedings of the 13th EAI International Conference on Pervasive Computing Technologies for Healthcare, 282--291. https://doi.org/10.1145/3329189.3329214
[67]
M. J. Rothmann, D. B. Danbjørg, C. M. Jensen, and J. Clemensen. 2016. Participatory Design in Health Care: Participation, Power and Knowledge. In Proceedings of the 14th Participatory Design Conference: Short Papers, Interactive Exhibitions, Workshops - Volume 2. Association for Computing Machinery, New York, NY, USA, 127--128. https://doi.org/10.1145/2948076.2948106
[68]
Benjamin Saunders, Julius Sim, Tom Kingstone, Shula Baker, Jackie Waterfield, Bernadette Bartlam, Heather Burroughs, and Clare Jinks. 2018. Saturation in Qualitative Research: Exploring its Conceptualization and Operationalization. Quality & Quantity, Vol. 52, 4 (2018), 1893--1907. https://doi.org/s11135-017-0574--8
[69]
Douglas Schuler and Aki Namioka. 1993. Participatory Design: Principles and Practices. CRC Press, Boca Raton, FL, USA.
[70]
Leon D. Segal and Jane Fulton Suri. 1997. The Empathic Practitioner: Measurement and Interpretation of User Experience. Proceedings of the Human Factors and Ergonomics Society Annual Meeting, Vol. 41, 1 (1997), 451--54. https://doi.org/10.1177/107118139704100199
[71]
Phoebe Sengers, Kirsten Boehner, Shay David, and Joseph `Jofish' Kaye. 2005. Reflective Design. In Proceedings of the 4th Decennial Conference on Critical Computing: Between Sense and Sensibility. Association for Computing Machinery, New York, NY, USA, 49--58. https://doi.org/10.1145/1094562.1094569
[72]
Smadar Shilo, Hagai Rossman, and Eran Segal. 2020. Axes of a Revolution: Challenges and Promises of Big Data in Healthcare. Nature Medicine, Vol. 26, 1 (2020), 29--38. https://doi.org/10.1038/s41591-019-0727--5
[73]
Katie Shilton. 2014. This is an Intervention: Foregrounding and Operationalizing Ethics during Technology Design. In Emerging Pervasive Information and Communication Technologies. Springer, 177--192. https://doi.org/10.1007/978--94-007--6833--8_9
[74]
Katie Shilton. 2018. Values and Ethics in Human-Computer Interaction. Foundations and Trends® in Human-Computer Interaction, Vol. 12, 2 (2018), 65 pages. https://doi.org/10.1561/1100000073
[75]
Clay Spinuzzi. 2002. Toward Integrating Our Research Scope: A Sociocultural Field Methodology. Journal of Business and Technical Communication, Vol. 16, 1 (2002), 3--32. https://doi.org/10.1177/1050651902016001001
[76]
Clay Spinuzzi. 2005. The Methodology of Participatory Design. Technical Communication, Vol. 52 (05 2005), 163--174.
[77]
Jake M. L. Stein, Vidminas Vizgirda, Max Van Kleek, Reuben Binns, Jun Zhao, Rui Zhao, Naman Goel, George Chalhoub, Wael S Albayaydh, and Nigel Shadbolt. 2023. ?You Are You and the App. There's Nobody Else.': Building Worker-Designed Data Institutions within Platform Hegemony. In Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, Article 281, 26 pages. https://doi.org/10.1145/3544548.3581114
[78]
Arnout Terpstra, Alexander Schouten, Alwin de Rooij, and Ronald Leenes. 2019. Improving Privacy Choice through Design: How Designing for Reflection Could Support Privacy Self-Management. First Monday, Vol. 24, 7, 1--13. https://doi.org/10.5210/fm.v24i7.9358
[79]
Lehana Thabane, Jinhui Ma, Rong Chu, Ji Cheng, Afisi Ismaila, Lorena P. Rios, Reid Robson, Marroon Thabane, Lora Giangregorio, and Charles H. Goldsmith. 2010. A Tutorial on Pilot Studies: The What, Why and How. BMC Medical Research Methodology, Vol. 10, 1 (2010), 1. https://doi.org/10.1186/1471--2288--10--1
[80]
Ashley Marie Walker, Yaxing Yao, Christine Geeng, Roberto Hoyle, and Pamela Wisniewski. 2019. Moving beyond `One Size Fits All': Research Considerations for Working with Vulnerable Populations. Interactions, Vol. 26, 6 (2019), 34--39. https://doi.org/10.1145/3358904
[81]
Jill Palzkill Woelfer, Amy Iverson, David G. Hendry, Batya Friedman, and Brian T. Gill. 2011. Improving the Safety of Homeless Young People with Mobile Phones: Values, Form and Function. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1707--1716. https://doi.org/10.1145/1978942.1979191
[82]
Janis Wong. 2023. Data Practices and Data Stewardship. Interactions, Vol. 30, 3 (2023), 60--63. https://doi.org/10.1145/3589133
[83]
Peter Wright and John McCarthy. 2010. Experience-Centered Design: Designers, Users, and Communities in Dialogue. Morgan and Claypool Publishers.
[84]
Daisy Yoo, Alina Huldtgren, Jill Palzkill Woelfer, David G. Hendry, and Batya Friedman. 2013. A Value Sensitive Action-Reflection Model: Evolving a Co-Design Space with Stakeholder and Designer Prompts. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 419--428. https://doi.org/10.1145/2470654.2470715
[85]
Sven Zenker, Daniel Strech, Kristina Ihrig, Roland Jahns, Gabriele Müller, Christoph Schickhardt, Georg Schmidt, Ronald Speer, Eva Winkler, Sebastian Graf von Kielmansegg, and Johannes Drepper. 2021. Data Protection-Compliant Broad Consent for Secondary Use of Health Care Data and Human Biosamples for (Bio)Medical Research: Towards a New German National Standard. preprint. Open Science Framework. https://doi.org/10.31219/osf.io/85rnp
Index Terms
- Advocating Values through Meaningful Participation: Introducing a Method to Elicit and Analyze Values for Enriching Data Donation Practices in Healthcare
Recommendations
Foregrounding Values through Public Participation: Eliciting Values of Citizens in the Context of Mobility Data Donation
MuC '23: Proceedings of Mensch und Computer 2023Citizen science (CS) projects are conducted with interested volunteers and have already shown promise for large-scale scientific research. However, CS tends to cultivate the sharing of large amounts of data. Towards this, our research aims to understand ...
Designing for children's values: conceptualizing value-sensitive technologies with children
IDC '20: Proceedings of the 2020 ACM Interaction Design and Children Conference: Extended AbstractsThis paper presents findings from an exploratory study with four children, ages 8 to 13 years, related to children's values in technology. The purpose is twofold: 1) to better understand children's values in a localized context both irrespective of and ...
Values-led Participatory Design as a Pursuit of Meaningful Alternatives
OzCHI '15: Proceedings of the Annual Meeting of the Australian Special Interest Group for Computer Human InteractionParticipatory Design (PD) is inherently concerned with inquiring into and supporting human values when designing IT. We argue that a PD approach that is led by a focus upon participants' values can allow participants to discover meaningful alternatives -...
Comments
Please enable JavaScript to view thecomments powered by Disqus.Information & Contributors
Information
Published In
Copyright © 2024 Owner/Author.
This work is licensed under a Creative Commons Attribution-ShareAlike International 4.0 License.
Publisher
Association for Computing Machinery
New York, NY, United States
Publication History
Published: 26 April 2024
Published in PACMHCI Volume 8, Issue CSCW1
Check for updates
Author Tags
Qualifiers
- Research-article
Funding Sources
- Federal Ministry of Education and Research
Contributors
Other Metrics
Bibliometrics & Citations
Bibliometrics
Article Metrics
- 0Total Citations
- 304Total Downloads
- Downloads (Last 12 months)304
- Downloads (Last 6 weeks)68
Reflects downloads up to 22 Nov 2024
Other Metrics
Citations
View Options
Login options
Check if you have access through your login credentials or your institution to get full access on this article.
Sign in