Unpicking Epistemic Injustices in Digital Health: On the Implications of Designing Data-Driven Technologies for the Management of Long-Term Conditions
Pages 322 - 332
Abstract
Applications of Artificial Intelligence (AI) in the domain of Personal Health Informatics (PHI) offer potential avenues for personalised treatment and support for people living with long-term conditions, however, they also present a number of ethical challenges. Whilst participatory approaches can help mitigate concerns by actively involving healthcare professionals, patients, and other stakeholders in design and development, these are constrained by the limits of epistemic standpoints and the risks posed by extrapolation from individuals to groups. In this paper we draw upon interviews with stakeholders involved in Human Immunodeficiency Virus (HIV) care, including clinicians, insurance providers and pharmaceutical industry representatives, to map intentions and ethical considerations for developing PHI tools for people living with HIV. Whilst treatment efficacy for HIV has improved patient quality of life and life expectancy, management and care is complicated by knowledge gaps about what living and ageing with HIV entails. We investigate how the critical concept of epistemic injustice can inform the design of data-driven technologies intended to address these gaps, helping orient expert perspectives within the broader structures and socio-historical influences that shape them. This is of particular importance when designing for marginalized populations such as people with HIV (i.e. who may experience social stigma and be under-resourced, managing multiple conditions), helping to identify and better account for fundamental ethical considerations such as equity.
References
[1]
Barry D Adam. 2011. Epistemic fault lines in biomedical and social approaches to HIV prevention. Journal of the International AIDS Society 14, 2 (2011), 1–9.
[2]
Keri N Althoff, Mikaela Smit, Peter Reiss, and Amy C Justice. 2016. HIV and ageing: improving quantity and quality of life. Current Opinion in HIV and AIDS 11, 5 (2016), 527.
[3]
Elizabeth Anderson. 2012. Epistemic justice as a virtue of social institutions. Social epistemology 26, 2 (2012), 163–173.
[4]
McKane Andrus, Elena Spitzer, Jeffrey Brown, and Alice Xiang. 2021. What we can’t measure, we can’t understand: challenges to demographic data procurement in the pursuit of fairness. In Proceedings of the 2021 ACM conference on fairness, accountability, and transparency. 249–260.
[5]
Eduardo Avila, Alessandro Kahmann, Clarice Alho, and Marcio Dorn. 2020. Hemogram data as a tool for decision-making in COVID-19 management: applications to resource scarcity scenarios. PeerJ 8 (2020), e9482.
[6]
Chelsea Barabas, Colin Doyle, JB Rubinovitz, and Karthik Dinakar. 2020. Studying up: reorienting the study of algorithmic fairness around issues of power. In Proceedings of the 2020 Conference on Fairness, Accountability, and Transparency. 167–176.
[7]
Eric PS Baumer and M Six Silberman. 2011. When the implication is not to design (technology). In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. 2271–2274.
[8]
David Beer. 2022. The problem of researching a recursive society: Algorithms, data coils and the looping of the social. Big Data & Society 9, 2 (2022), 20539517221104997.
[9]
Himani Bhakuni and Seye Abimbola. 2021. Epistemic injustice in academic global health. The Lancet Global Health 9, 10 (2021), e1465–e1470.
[10]
Karthik S Bhat and Neha Kumar. 2020. Sociocultural dimensions of tracking health and taking care. Proceedings of the ACM on Human-Computer Interaction 4, CSCW2 (2020), 1–24.
[11]
Jo-Anne Bichard, Roger Coleman, and Patrick Langdon. 2007. Does my stigma look big in this? Considering acceptability and desirability in the inclusive design of technology products. In Universal Acess in Human Computer Interaction. Coping with Diversity: 4th International Conference on Universal Access in Human-Computer Interaction, UAHCI 2007, Held as Part of HCI International 2007, Beijing, China, July 22-27, 2007, Proceedings, Part I 4. Springer, 622–631.
[12]
Abeba Birhane. 2021. Algorithmic injustice: a relational ethics approach. Patterns 2, 2 (2021), 100205.
[13]
C Blake Helms, Janet M Turan, Ghislaine Atkins, Mirjam-Colette Kempf, Olivio J Clay, James L Raper, Michael J Mugavero, and Bulent Turan. 2017. Interpersonal mechanisms contributing to the association between HIV-related internalized stigma and medication adherence. AIDS and Behavior 21 (2017), 238–247.
[14]
Ann Blandford, Janet Wesson, René Amalberti, Raed AlHazme, and Ragad Allwihan. 2020. Opportunities and challenges for telehealth within, and beyond, a pandemic. The Lancet Global Health 8, 11 (2020), e1364–e1365.
[15]
Shay Bluemer-Miroite, Katy Potter, Elizabeth Blanton, Georgia Simmonds, Conrad Mitchell, Kenyatta Barnaby, Karen Askov Zeribi, Dale Babb, Nicola Skyers, Gabrielle O’Malley, 2022. “Nothing for Us Without Us”: An Evaluation of Patient Engagement in an HIV Care Improvement Collaborative in the Caribbean. Global Health: Science and Practice 10, 3 (2022).
[16]
Ricky N Bluthenthal, Kartika Palar, Peter Mendel, David E Kanouse, Dennis E Corbin, and Kathryn Pitkin Derose. 2012. Attitudes and beliefs related to HIV/AIDS in urban religious congregations: Barriers and opportunities for HIV-related interventions. Social science & medicine 74, 10 (2012), 1520–1527.
[17]
Alexander Bogner, Beate Littig, and Wolfgang Menz. 2009. Introduction: Expert interviews—An introduction to a new methodological debate. In Interviewing experts. Springer, 1–13.
[18]
Elizabeth Bondi, Lily Xu, Diana Acosta-Navas, and Jackson A Killian. 2021. Envisioning communities: a participatory approach towards AI for social good. In Proceedings of the 2021 AAAI/ACM Conference on AI, Ethics, and Society. 425–436.
[19]
Sophie Bourgault. 2020. Epistemic injustice, face-to-face encounters and caring institutions. International Journal of Care and Caring 4, 1 (2020), 91–107.
[20]
Virginia Braun and Victoria Clarke. 2021. Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern-based qualitative analytic approaches. Counselling and Psychotherapy Research 21, 1 (2021), 37–47.
[21]
Adrian Bussone. 2018. Reflection and personal health informatics for people living with HIV. Ph. D. Dissertation. City, University of London.
[22]
Adrian Bussone, Bakita Kasadha, Simone Stumpf, Abigail C Durrant, Shema Tariq, Jo Gibbs, Karen C Lloyd, and Jon Bird. 2020. Trust, identity, privacy, and security considerations for designing a peer data sharing platform between people living with HIV. Proceedings of the ACM on Human-Computer Interaction 4, CSCW2 (2020), 1–27.
[23]
Danielle C Butler, Grace Joshy, Kirsty A Douglas, Muhammad-Shahdaat Bin-Sayeed, Jennifer Welsh, Angus Douglas, and Rosemary J Korda. 2022. Changes in General Practice use and costs with COVID-19 and telehealth initiatives. medRxiv (2022).
[24]
T Campbell, D Dalton, P Fleming, G Llorca, S Mulubale, M Rattue, F Serle, and C Squire. 2020. Foreword to APPG Policy Report: The Missing Link: HIV and mental health. (2020).
[25]
Amandine Catala, Luc Faucher, and Pierre Poirier. 2021. Autism, epistemic injustice, and epistemic disablement: A relational account of epistemic agency. Synthese 199, 3-4 (2021), 9013–9039.
[26]
Marianela Ciolfi Felice, Marie Louise Juul Søndergaard, and Madeline Balaam. 2021. Resisting the Medicalisation of Menopause: Reclaiming the Body through Design. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. 1–16.
[27]
Caroline Claisse, Bakita Kasadha, Simone Stumpf, and Abigail C Durrant. 2022. Investigating Daily Practices of Self-care to Inform the Design of Supportive Health Technologies for Living and Ageing Well with HIV. In Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems. 1–19.
[28]
Sasha Costanza-Chock. 2020. Design justice: Community-led practices to build the worlds we need. The MIT Press.
[29]
Andrew Dalton. 2017. ‘Just Take a Tablet and You’ll be Ok’: Medicalisation, the Growth of Stigma and the Silencing of HIV.HIV Nursing 17, 2 (2017), 63–68.
[30]
Dána-Ain Davis. 2019. Obstetric racism: the racial politics of pregnancy, labor, and birthing. Medical anthropology 38, 7 (2019), 560–573.
[31]
Rageshri Dhairyawan, Hajra Okhai, Teresa Hill, Caroline A Sabin, and UK Collaborative HIV Cohort UK CHIC Study. 2021. Differences in HIV clinical outcomes amongst heterosexuals in the United Kingdom by ethnicity. AIDS (London, England) 35, 11 (2021), 1813.
[32]
Rebecca Dillingham, Karen Ingersoll, Tabor E Flickinger, Ava Lena Waldman, Marika Grabowski, Colleen Laurence, Erin Wispelwey, George Reynolds, Mark Conaway, and Wendy F Cohn. 2018. PositiveLinks: a mobile health intervention for retention in HIV care and clinical outcomes with 12-month follow-up. AIDS patient care and STDs 32, 6 (2018), 241–250.
[33]
Joseph Donia and James A Shaw. 2021. Co-design and ethical artificial intelligence for health: An agenda for critical research and practice. Big Data & Society 8, 2 (2021), 20539517211065248.
[34]
Valerie A Earnshaw, Laura M Bogart, John F Dovidio, and David R Williams. 2015. Stigma and racial/ethnic HIV disparities: moving toward resilience. (2015).
[35]
Valerie A Earnshaw, Diane M Quinn, and Crystal L Park. 2012. Anticipated stigma and quality of life among people living with chronic illnesses. Chronic illness 8, 2 (2012), 79–88.
[36]
Valerie A Earnshaw, Laramie R Smith, Stephenie R Chaudoir, K Rivet Amico, and Michael M Copenhaver. 2013. HIV stigma mechanisms and well-being among PLWH: a test of the HIV stigma framework. AIDS and Behavior 17, 5 (2013), 1785–1795.
[37]
Jonathan Elford, Fowzia Ibrahim, Cecilia Bukutu, and Jane Anderson. 2008. HIV-related discrimination reported by people living with HIV in London, UK. AIDS and Behavior 12 (2008), 255–264.
[38]
Malcolm Fisk, Anne Livingstone, Sabrina Winona Pit, 2020. Telehealth in the context of COVID-19: changing perspectives in Australia, the United Kingdom, and the United States. Journal of medical Internet research 22, 6 (2020), e19264.
[39]
Miranda Fricker. 2017. Evolving concepts of epistemic injustice. In The Routledge handbook of epistemic injustice. Routledge, 53–60.
[40]
Bilwaj Gaonkar, Kirstin Cook, and Luke Macyszyn. 2020. Ethical issues arising due to bias in training AI algorithms in healthcare and data sharing as a potential solution. The AI Ethics Journal 1, 1 (2020).
[41]
Becky L Genberg, Zdenek Hlavka, Kelika A Konda, Suzanne Maman, Suwat Chariyalertsak, Alfred Chingono, Jessie Mbwambo, Precious Modiba, Heidi Van Rooyen, and David D Celentano. 2009. A comparison of HIV/AIDS-related stigma in four countries: Negative attitudes and perceived acts of discrimination towards people living with HIV/AIDS. Social science & medicine 68, 12 (2009), 2279–2287.
[42]
Jessica E Haberer, Angella Musiimenta, Esther C Atukunda, Nicholas Musinguzi, Monique A Wyatt, Norma C Ware, and David R Bangsberg. 2016. Short message service (SMS) reminders and real-time adherence monitoring improve antiretroviral therapy adherence in rural Uganda. AIDS (London, England) 30, 8 (2016), 1295.
[43]
Tereza Hendl and Bianca Jansky. 2022. Tales of self-empowerment through digital health technologies: a closer look at ‘Femtech’. Review of Social Economy 80, 1 (2022), 29–57.
[44]
Sarah Homewood. 2019. Inaction as a design decision: Reflections on not designing self-tracking tools for menopause. In Extended Abstracts of the 2019 CHI Conference on Human Factors in Computing Systems. 1–12.
[45]
Francisco Ibáñez-Carrasco, James R Watson, and James Tavares. 2019. Supporting peer researchers: recommendations from our lived experience/expertise in community-based research in Canada. Harm reduction journal 16, 1 (2019), 1–5.
[46]
Rusi Jaspal, Kate Zoe Nambiar, Valerie Delpech, and Shema Tariq. 2018. HIV and trans and non-binary people in the UK., 318–319 pages.
[47]
Ian James Kidd and Havi Carel. 2017. Epistemic injustice and illness. Journal of applied philosophy 34, 2 (2017), 172–190.
[48]
Goda Klumbytė, Claude Draude, and Alex S Taylor. 2022. Critical tools for machine learning: Working with intersectional critical concepts in machine learning systems design. In 2022 ACM Conference on Fairness, Accountability, and Transparency. 1528–1541.
[49]
Amanda M Kong, Alexis Pozen, Kathryn Anastos, Elizabeth A Kelvin, and Denis Nash. 2019. Non-HIV comorbid conditions and polypharmacy among people living with HIV age 65 or older compared with HIV-negative individuals age 65 or older in the United States: a retrospective claims-based analysis. AIDS patient care and STDs 33, 3 (2019), 93–103.
[50]
Carolyn Lauckner, Erica Taylor, Darshti Patel, and Alexis Whitmire. 2019. The feasibility of using smartphones and mobile breathalyzers to monitor alcohol consumption among people living with HIV/AIDS. Addiction science & clinical practice 14, 1 (2019), 1–11.
[51]
Helen Lauer and Joan Shenton. 2017. How epistemic injustice in the global health arena undermines public health care delivery in Africa. In 25th International Congress of History of Science and Technology. 23–29.
[52]
Jeffrey V Lazarus, Kelly Safreed-Harmon, Simon E Barton, Dominique Costagliola, Nikos Dedes, Julia del Amo Valero, Jose M Gatell, Ricardo Baptista-Leite, Luís Mendão, Kholoud Porter, 2016. Beyond viral suppression of HIV–the new quality of life frontier. BMC medicine 14, 1 (2016), 1–5.
[53]
Susan Leavy, Eugenia Siapera, and Barry O’Sullivan. 2021. Ethical data curation for ai: An approach based on feminist epistemology and critical theories of race. In Proceedings of the 2021 AAAI/ACM Conference on AI, Ethics, and Society. 695–703.
[54]
Ji-Young Lee. 2021. Anticipatory epistemic injustice. Social Epistemology 35, 6 (2021), 564–576.
[55]
Deborah Lupton. 2016. Towards critical digital health studies: Reflections on two decades of research in health and the way forward. Health: 20, 1 (2016), 49–61.
[56]
Juan F Maestre, Patrycja Zdziarska, Aehong Min, Anna N Baglione, Chia-Fang Chung, and Patrick C Shih. 2021. Not another medication adherence app: Critical reflections on addressing public HIV-related stigma through design. Proceedings of the ACM on Human-Computer Interaction 4, CSCW3 (2021), 1–28.
[57]
Andre Maiorana, Wayne T Steward, Kimberly A Koester, Charles Pearson, Starley B Shade, Deepalika Chakravarty, and Janet J Myers. 2012. Trust, confidentiality, and the acceptability of sharing HIV-related patient data: lessons learned from a mixed methods study about Health Information Exchanges. Implementation Science 7, 1 (2012), 1–14.
[58]
Aqueasha Martin-Hammond and Tanjala S Purnell. 2022. Bridging Community, History, and Culture in Personal Informatics Tools: Insights from an Existing Community-Based Heart Health Intervention for Black Americans. Proceedings of the ACM on Human-Computer Interaction 6, GROUP (2022), 1–23.
[59]
A Molloy, H Curtis, F Burns, A Freedman, BHIVA Audit, and Standards Sub-Committee. 2017. Routine monitoring and assessment of adults living with HIV: results of the British HIV Association (BHIVA) national audit 2015. BMC Infectious Diseases 17 (2017), 1–7.
[60]
Emile Camille Noubissi, Jean-Claude Katte, and Eugene Sobngwi. 2018. Diabetes and HIV. Current diabetes reports 18, 11 (2018), 1–8.
[61]
Francisco Nunes. 2019. From medicalized to mundane self-care technologies. interactions 26, 3 (2019), 67–69.
[62]
C O’Halloran, S Sun, S Nash, A Brown, S Croxford, N Connor, AK Sullivan, V Delpech, and ON Gill. 2019. HIV in the United Kingdom: towards zero 2030. 2019 report. London: Public Health England (2019).
[63]
Marija Pantelic, Janina I Steinert, George Ayala, Laurel Sprague, Judy Chang, Ruth Morgan Thomas, Cedric Nininahazwe, Georgina Caswell, Anders M Bach-Mortensen, and Adam Bourne. 2022. Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement. Journal of the International AIDS Society 25, 1 (2022), e25880.
[64]
Gaile Pohlhaus. 2012. Relational knowing and epistemic injustice: Toward a theory of willful hermeneutical ignorance. Hypatia 27, 4 (2012), 715–735.
[65]
Tanvi Rai, Jane Bruton, Meaghan Kall, Richard Ma, Erica Pufall, Sophie Day, Valerie Delpech, and Helen Ward. 2019. Experience of primary care for people with HIV: a mixed-method analysis. BJGP open 3, 4 (2019).
[66]
Keisha Ray. 2019. The power of black patients’ testimonies when teaching medical racism. Teaching health humanities 129 (2019).
[67]
Nithya Sambasivan, Erin Arnesen, Ben Hutchinson, Tulsee Doshi, and Vinodkumar Prabhakaran. 2021. Re-imagining algorithmic fairness in india and beyond. In Proceedings of the 2021 ACM conference on fairness, accountability, and transparency. 315–328.
[68]
Jennifer N Sayles, Mitchell D Wong, Janni J Kinsler, David Martins, and William E Cunningham. 2009. The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with HIV/AIDS. Journal of general internal medicine 24, 10 (2009), 1101–1108.
[69]
Rebecca Schnall, Peter Gordon, Eli Camhi, and Suzanne Bakken. 2011. Perceptions of factors influencing use of an electronic record for case management of persons living with HIV. AIDS care 23, 3 (2011), 357–365.
[70]
John Symons and Ramón Alvarado. 2022. Epistemic injustice and data science technologies. Synthese 200, 2 (2022), 1–26.
[71]
Shema Tariq and Bakita Kasadha. 2022. HIV and women’s health: Where are we now?, 17455065221076341 pages.
[72]
Alex Taylor and Light Anne. 2019. The Name of the Title Is Hope. In Workshop position paper for ‘Standing on the Shoulders of Giants: Exploring the Intersection of Philosophy and HCI’, CHI, Vol. 19.
[73]
Felicity Thomas, Peter Aggleton, and Jane Anderson. 2010. “If I cannot access services, then there is no reason for me to test”: the impacts of health service charges on HIV testing and treatment amongst migrants in England. AIDS care 22, 4 (2010), 526–531.
[74]
Virginia A Triant, Hang Lee, Colleen Hadigan, and Steven K Grinspoon. 2007. Increased acute myocardial infarction rates and cardiovascular risk factors among patients with human immunodeficiency virus disease. The Journal of Clinical Endocrinology & Metabolism 92, 7 (2007), 2506–2512.
[75]
Janet M Turan, Melissa A Elafros, Carmen H Logie, Swagata Banik, Bulent Turan, Kaylee B Crockett, Bernice Pescosolido, and Sarah M Murray. 2019. Challenges and opportunities in examining and addressing intersectional stigma and health. BMC medicine 17 (2019), 1–15.
[76]
Leo Van Audenhove. 2007. Expert interviews and interview techniques for policy analysis. Vrije University, Brussel Retrieved May 5 (2007), 2009.
[77]
Morgan Vigil-Hayes, Ann Futterman Collier, Shelby Hagemann, Giovanni Castillo, Keller Mikkelson, Joshua Dingman, Andrew Muñoz, Jade Luther, and Alexandra McLaughlin. 2021. Integrating cultural relevance into a behavioral mHealth intervention for Native American youth. Proceedings of the ACM on human-computer interaction 5, CSCW1 (2021), 1–29.
[78]
Evelyn Wan, Aviva de Groot, Shazade Jameson, Mara Păun, Phillip Lücking, Goda Klumbyte, and Danny Lämmerhirt. 2020. Lost in Translation: An interactive workshop mapping interdisciplinary translations for epistemic justice. In Proceedings of the 2020 Conference on Fairness, Accountability, and Transparency. 692–692.
[79]
Alistair Wardrope. 2015. Medicalization and epistemic injustice. Medicine, Health Care and Philosophy 18, 3 (2015), 341–352.
[80]
Mitchell G Weiss, Jayashree Ramakrishna, and Daryl Somma. 2006. Health-related stigma: rethinking concepts and interventions. Psychology, health & medicine 11, 3 (2006), 277–287.
[81]
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. 3066–3078.
[82]
Peter West, Max Van Kleek, Richard Giordano, Mark J Weal, and Nigel Shadbolt. 2018. Common barriers to the use of patient-generated data across clinical settings. In proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. 1–13.
[83]
Anandi Yuvaraj, Vaishali S Mahendra, Venkatesan Chakrapani, Evy Yunihastuti, Anthony J Santella, Amitha Ranauta, and Janine Doughty. 2020. HIV and stigma in the healthcare setting. Oral Diseases 26 (2020), 103–111.
Index Terms
- Unpicking Epistemic Injustices in Digital Health: On the Implications of Designing Data-Driven Technologies for the Management of Long-Term Conditions
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DOI:10.1145/3600211
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