HIV Client Perspectives on Digital Health in Malawi (2404.04444v1)
Abstract: eHealth has strong potential to advance HIV care in low- and middle-income countries. Given the sensitivity of HIV-related information and the risks associated with unintended HIV status disclosure, clients' privacy perceptions towards eHealth applications should be examined to develop client-centered technologies. Through focus group discussions with antiretroviral therapy (ART) clients from Lighthouse Trust, Malawi's public HIV care program, we explored perceptions of data security and privacy, including their understanding of data flow and their concerns about data confidentiality across several layers of data use. Our findings highlight the broad privacy concerns that affect ART clients' day-to-day choices, clients' trust in Malawi's health system, and their acceptance of, and familiarity with, point-of-care technologies used in HIV care. Based on our findings, we provide recommendations for building robust digital health systems in low- and middle-income countries with limited resources, nascent privacy regulations, and political will to take action to protect client data.
- 2020. Principles for Digital Development. http://digitalprinciples.org/.
- 2021. AIDSinfo. https://aidsinfo.unaids.org/.
- 2023. Malawi HIV and AIDS Estimates. https://www.unaids.org/en/regionscountries/countries/malawi.
- Yasser K Alotaibi and Frank Federico. 2017. The impact of health information technology on patient safety. Saudi medical journal 38, 12 (2017), 1173.
- Medical Record Privacy: Is It a Facade?. In CHI ’11 Extended Abstracts on Human Factors in Computing Systems (Vancouver, BC, Canada) (CHI EA ’11). Association for Computing Machinery, New York, NY, USA, 2203–2208. https://doi.org/10.1145/1979742.1979918
- Brandford Bervell and Hosam Al-Samarraie. 2019. A comparative review of mobile health and electronic health utilization in sub-Saharan African countries. Social Science & Medicine 232 (2019), 1–16.
- Challenges and Opportunities for Interactive Technology to Support Parents of HIV-Positive Children in Ethiopia in the Disclosure Process. In Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems (¡conf-loc¿, ¡city¿Hamburg¡/city¿, ¡country¿Germany¡/country¿, ¡/conf-loc¿) (CHI ’23). Association for Computing Machinery, New York, NY, USA, Article 557, 17 pages. https://doi.org/10.1145/3544548.3580756
- Virginia Braun and Victoria Clarke. 2006. Using thematic analysis in psychology. Qualitative research in psychology 3, 2 (2006), 77–101.
- Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIV. Proc. ACM Hum.-Comput. Interact. 4, CSCW2, Article 173 (oct 2020), 27 pages. https://doi.org/10.1145/3415244
- 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 (Gothenburg, Sweden) (NordiCHI ’16). Association for Computing Machinery, New York, NY, USA, Article 55, 10 pages. https://doi.org/10.1145/2971485.2971542
- Kelly Caine and Rima Hanania. 2013. Patients want granular privacy control over health information in electronic medical records. Journal of the American Medical Informatics Association 20, 1 (2013), 7–15.
- German Daniel Caruso and Lina Marcela Cardona Sosa. 2022. Malawi Poverty Assessment : Poverty Persistence in Malawi - Climate Shocks, Low Agricultural Productivity, and Slow Structural Transformation (English). World Bank Group (2022). http://documents.worldbank.org/curated/en/099920006302215250/P174948072f3880690afb70c20973fe214d
- Implementation of provider-based electronic medical records and improvement of the quality of data in a large HIV program in Sub-Saharan Africa. PloS one 7, 12 (2012), e51631.
- Unpacking Exam-Room Computing: Negotiating Computer-Use in Patient-Physician Interactions. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (Vancouver, BC, Canada) (CHI ’11). Association for Computing Machinery, New York, NY, USA, 3343–3352. https://doi.org/10.1145/1978942.1979438
- Yunan Chen and Heng Xu. 2013. Privacy Management in Dynamic Groups: Understanding Information Privacy in Medical Practices. In Proceedings of the 2013 Conference on Computer Supported Cooperative Work (San Antonio, Texas, USA) (CSCW ’13). Association for Computing Machinery, New York, NY, USA, 541–552. https://doi.org/10.1145/2441776.2441837
- Barriers to acceptance of personal digital assistants for HIV/AIDS data collection in Angola. International Journal of Medical Informatics 80, 8 (2011), 579–585.
- Participant and Interviewer Attitudes toward Handheld Computers in the Context of HIV/AIDS Programs in Sub-Saharan Africa. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (Florence, Italy) (CHI ’08). Association for Computing Machinery, New York, NY, USA, 763–766. https://doi.org/10.1145/1357054.1357175
- Availability and experiences of differentiated antiretroviral therapy delivery at HIV care facilities in rural Zimbabwe: a mixed-method study. Journal of the International AIDS Society 25, 8 (2022), e25944.
- Computers in the clinical encounter: a scoping review and thematic analysis. Journal of the American Medical Informatics Association 23, 3 (01 2016), 654–665. https://doi.org/10.1093/jamia/ocv178 arXiv:https://academic.oup.com/jamia/article-pdf/23/3/654/34938533/ocv178.pdf
- HIV disclosure in rural China: predictors and relationship to access to care. AIDS care 23, 9 (2011), 1059–1066.
- Psychosocial factors affecting medication adherence among HIV-1 infected adults receiving combination antiretroviral therapy (cART) in Botswana. AIDS research and human retroviruses 26, 6 (2010), 685–691.
- Using touchscreen electronic medical record systems to support and monitor national scale-up of antiretroviral therapy in Malawi. PLoS medicine 7, 8 (2010), e1000319.
- Using Touchscreen Electronic Medical Record Systems to Support and Monitor National Scale-Up of Antiretroviral Therapy in Malawi. PLOS Medicine 7, 8 (08 2010), 1–6. https://doi.org/10.1371/journal.pmed.1000319
- Barriers and facilitators to exchanging health information: a systematic review. International Journal of Medical Informatics 88 (2016), 44–51. https://doi.org/10.1016/j.ijmedinf.2016.01.004
- A behavioral adherence intervention improves rates of viral suppression among adherence-challenged people living with HIV in South India. AIDS and Behavior 24 (2020), 2195–2205.
- Pouyan Esmaeilzadeh et al. 2019. The impacts of the perceived transparency of privacy policies and trust in providers for building trust in health information exchange: empirical study. JMIR medical informatics 7, 4 (2019), e14050.
- Electronic health records, mobile health, and the challenge of improving global health. Current Problems in Pediatric and Adolescent Health Care 52, 1 (2022), 101111. https://doi.org/10.1016/j.cppeds.2021.101111 Perspectives on the Past, Present and Future of Pediatric Electronic Health Records.
- Implementing electronic medical record systems in developing countries. Informatics in primary care 13, 2 (2005).
- An information system and medical record to support HIV treatment in rural Haiti. BMJ 329, 7475 (2004), 1142–1146. https://doi.org/10.1136/bmj.329.7475.1142 arXiv:https://www.bmj.com/content/329/7475/1142.full.pdf
- The need for cost-benefit analyses of eHealth in low and middle-income countries. In MEDINFO 2015: eHealth-enabled Health. IOS Press, 981–981.
- Harsha S. Gardiyawasam Pussewalage and Vladimir A. Oleshchuk. 2016. Privacy preserving mechanisms for enforcing security and privacy requirements in E-health solutions. International Journal of Information Management 36, 6, Part B (2016), 1161–1173. https://doi.org/10.1016/j.ijinfomgt.2016.07.006
- Arash Ghazvini and Zarina Shukur. 2013. Security Challenges and Success Factors of Electronic Healthcare System. Procedia Technology 11 (2013), 212–219. https://doi.org/10.1016/j.protcy.2013.12.183 4th International Conference on Electrical Engineering and Informatics, ICEEI 2013.
- Michael J. Gonzales and Laurel D. Riek. 2013. Co-Designing Patient-Centered Health Communication Tools for Cancer Care. In Proceedings of the 7th International Conference on Pervasive Computing Technologies for Healthcare (Venice, Italy) (PervasiveHealth ’13). ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering), Brussels, BEL, 208–215. https://doi.org/10.4108/icst.pervasivehealth.2013.252109
- Assessing the impact of mHealth interventions in low-and middle-income countries–what has been shown to work? Global health action 7, 1 (2014), 25606.
- Calum Handforth and Matthew Wilson. 2019. Digital Identity Country Report: Malawi. GSMA Digital Identity Programme. Commonwealth Digital Identity Initiative (2019).
- Transform Health. 2022. Health Data Governance Principles. https://www.healthdataprinciples.org/
- Constructing common information spaces. In Proceedings of the Fifth European Conference on Computer Supported Cooperative Work. Springer, 81–96.
- A guiding framework for creating a comprehensive strategy for mHealth data sharing, privacy, and governance in low- and middle-income countries (LMICs). Journal of the American Medical Informatics Association 30, 4 (10 2022), 787–794. https://doi.org/10.1093/jamia/ocac198 arXiv:https://academic.oup.com/jamia/article-pdf/30/4/787/49524410/ocac198.pdf
- Barriers to timely disclosure of HIV serostatus: A qualitative study at care and treatment centers in Dar es Salaam, Tanzania. Plos one 16, 8 (2021), e0256537.
- 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 (Vancouver, BC, Canada) (CSCW ’15). Association for Computing Machinery, New York, NY, USA, 808–818. https://doi.org/10.1145/2675133.2675252
- Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. Journal of behavioral medicine 26 (2003), 315–332.
- “That Courage to Encourage”: Participation and Aspirations in Chat-Based Peer Support for Youth Living with HIV. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (Yokohama, Japan) (CHI ’21). Association for Computing Machinery, New York, NY, USA, Article 223, 17 pages. https://doi.org/10.1145/3411764.3445313
- Christopher G Kemp and Jennifer Velloza. 2018. Implementation of eHealth interventions across the HIV care cascade: a review of recent research. Current HIV/AIDS Reports 15 (2018), 403–413.
- Comparison of consumers’ views on electronic data sharing for healthcare and research. Journal of the American Medical Informatics Association 22, 4 (03 2015), 821–830. https://doi.org/10.1093/jamia/ocv014 arXiv:https://academic.oup.com/jamia/article-pdf/22/4/821/34145663/ocv014.pdf
- Challenges and opportunities of a paperless baseline survey in Sri Lanka. BMC research notes 7, 1 (2014), 1–7.
- Isaac S Kohane and Russ B Altman. 2005. Health-information altruists–a potentially critical resource. N Engl J Med 353, 19 (2005), 2074–2077.
- Neha Kumar and Richard J. Anderson. 2015. Mobile Phones for Maternal Health in Rural India. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (Seoul, Republic of Korea) (CHI ’15). Association for Computing Machinery, New York, NY, USA, 427–436. https://doi.org/10.1145/2702123.2702258
- Restoration Work: Responding to Everyday Challenges of HIV Outreach. Proc. ACM Hum.-Comput. Interact. 3, CSCW, Article 54 (nov 2019), 26 pages. https://doi.org/10.1145/3359156
- Design Considerations for Patient Portal Adoption by Low-Income, Older Adults. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (Seoul, Republic of Korea) (CHI ’15). Association for Computing Machinery, New York, NY, USA, 3859–3868. https://doi.org/10.1145/2702123.2702392
- Patient and provider perspectives on eHealth interventions in Canada and Australia: a scoping review. Rural and remote health 20, 3 (2020), 1–11.
- Pride Linda. 2013. To tell or not to tell: negotiating disclosure for people living with HIV on antiretroviral treatment in a South African setting. SAHARA-J: Journal of Social Aspects of HIV/AIDS 10 (2013), S17–S27.
- Preserving Patient Privacy When Sharing Same-Disease Data. J. Data and Information Quality 7, 4, Article 17 (oct 2016), 14 pages. https://doi.org/10.1145/2956554
- ”It’s like With the Pregnancy Tests”: Co-Design of Speculative Technology for Public HIV-Related Stigma and Its Implications for Social Media. In Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems (Hamburg, Germany) (CHI ’23). Association for Computing Machinery, New York, NY, USA, Article 337, 21 pages. https://doi.org/10.1145/3544548.3581033
- Not Another Medication Adherence App: Critical Reflections on Addressing Public HIV-Related Stigma Through Design. Proc. ACM Hum.-Comput. Interact. 4, CSCW3, Article 262 (jan 2021), 28 pages. https://doi.org/10.1145/3434171
- Mobile health (mHealth) in low-and middle-income countries. Annual Review of Public Health 43 (2022), 525–539.
- Implementing electronic data capture at a well-established health and demographic surveillance site in rural northern Malawi. Global health action 10, 1 (2017), 1367162.
- Female respondent acceptance of computer-assisted personal interviewing (CAPI) for maternal, newborn and child health coverage surveys in rural Uganda. International journal of medical informatics 98 (2017), 41–46.
- Designing with Community Health Workers: Enabling Productive Participation Through Exploration. In Proceedings of the First African Conference on Human Computer Interaction (Nairobi, Kenya) (AfriCHI’16). Association for Computing Machinery, New York, NY, USA, 58–68. https://doi.org/10.1145/2998581.2998589
- Patient and researcher stakeholder preferences for use of electronic health record data: a qualitative study to guide the design and development of a platform to honor patient preferences. Journal of the American Medical Informatics Association 30, 6 (05 2023), 1137–1149. https://doi.org/10.1093/jamia/ocad058 arXiv:https://academic.oup.com/jamia/article-pdf/30/6/1137/50374732/ocad058.pdf
- Privacy Practices in Collaborative Environments: A Study of Emergency Department Staff. In Proceedings of the 17th ACM Conference on Computer Supported Cooperative Work & Social Computing (Baltimore, Maryland, USA) (CSCW ’14). Association for Computing Machinery, New York, NY, USA, 269–282. https://doi.org/10.1145/2531602.2531643
- “If I have nothing to eat, I get angry and push the pills bottle away from me”: A qualitative study of patient determinants of adherence to antiretroviral therapy in the Democratic Republic of Congo. AIDS care 25, 10 (2013), 1271–1277.
- 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 (Cape Town, South Africa) (ICTD ’13). Association for Computing Machinery, New York, NY, USA, 143–152. https://doi.org/10.1145/2516604.2516627
- Patient and provider perspectives on how trust influences maternal vaccine acceptance among pregnant women in Kenya. BMC Health Services Research 19 (2019), 1–13.
- Methods for Patient-Centered Interface Design of Test Result Display in Online Portals. EGEMS (Washington, DC) 6, 1 (June 2018), 15. https://doi.org/10.5334/egems.255
- Aisling Ann O’Kane and Helena Mentis. 2012. Sharing Medical Data vs. Health Knowledge in Chronic Illness Care. In CHI ’12 Extended Abstracts on Human Factors in Computing Systems (Austin, Texas, USA) (CHI EA ’12). Association for Computing Machinery, New York, NY, USA, 2417–2422. https://doi.org/10.1145/2212776.2223812
- “It Cannot Do All of My Work”: Community Health Worker Perceptions of AI-Enabled Mobile Health Applications in Rural India. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (Yokohama, Japan) (CHI ’21). Association for Computing Machinery, New York, NY, USA, Article 701, 20 pages. https://doi.org/10.1145/3411764.3445420
- The effect of electronic medical record-based clinical decision support on HIV care in resource-constrained settings: A systematic review. International Journal of Medical Informatics 81, 10 (2012), e83–e92. https://doi.org/10.1016/j.ijmedinf.2012.07.010 Health Information Electronic Network Systems for People Living with HIV/AIDS in Underserved Communities.
- Chrysanthi Papoutsi and Ian Brown. 2015. Privacy as Articulation Work in HIV Health Services. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (Vancouver, BC, Canada) (CSCW ’15). Association for Computing Machinery, New York, NY, USA, 339–348. https://doi.org/10.1145/2675133.2675204
- 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 (Portland, Oregon, USA) (CSCW ’17). Association for Computing Machinery, New York, NY, USA, 2179–2192. https://doi.org/10.1145/2998181.2998357
- Understanding the drivers and outcomes of healthcare organizational privacy responses. (2011).
- Healthcare information privacy research: Issues, gaps and what next? (2011).
- “We are part of a family”. Benefits and limitations of community ART groups (CAGs) in Thyolo, Malawi: a qualitative study. Journal of the International AIDS Society 20, 1 (2017), 21374.
- Jodyn Platt and Sharon Kardia. 2015. Public trust in health information sharing: implications for biobanking and electronic health record systems. Journal of personalized medicine 5, 1 (2015), 3–21.
- Differences That Matter: In-Clinic Communication Challenges. In Proceedings of the 11th EAI International Conference on Pervasive Computing Technologies for Healthcare (Barcelona, Spain) (PervasiveHealth ’17). Association for Computing Machinery, New York, NY, USA, 251–260. https://doi.org/10.1145/3154862.3154885
- Coordinating heterogeneous work: Information and representation in medical care. In ECSCW 2001: Proceedings of the Seventh European Conference on Computer Supported Cooperative Work 16–20 September 2001, Bonn, Germany. Springer, 239–258.
- Mobile Health Solutions for Hypertensive Disorders in Pregnancy: Scoping Literature Review. JMIR Mhealth Uhealth 6, 5 (30 May 2018), e130. https://doi.org/10.2196/mhealth.9671
- Understanding How EHealth Coaches Tailor Support For Weight Loss: Towards the Design of Person-Centered Coaching Systems. In Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems (New Orleans, LA, USA) (CHI ’22). Association for Computing Machinery, New York, NY, USA, Article 285, 16 pages. https://doi.org/10.1145/3491102.3501864
- Development of a point-of-care HIV/AIDS medication dosing support system using the Android mobile platform. Journal of medical systems 36 (2012), 1583–1591.
- Patient and nurse perspectives of a nurse-led community-based model of HIV care delivery in Malawi: a qualitative study. BMC public health 20 (2020), 1–8.
- Patient preferences in controlling access to their electronic health records: a prospective cohort study in primary care. Journal of general internal medicine 30 (2015), 25–30.
- Aviv Shachak and Shmuel Reis. 2009. The impact of electronic medical records on patient–doctor communication during consultation: a narrative literature review. Journal of evaluation in clinical practice 15, 4 (2009), 641–649.
- Understanding the patient privacy perspective on health information exchange: A systematic review. International Journal of Medical Informatics 125 (2019), 1–12. https://doi.org/10.1016/j.ijmedinf.2019.01.014
- Gradual electronic health record implementation: new insights on physician and patient adaptation. The Annals of Family Medicine 8, 4 (2010), 316–326.
- The use of personal digital assistants for data entry at the point of collection in a large household survey in southern Tanzania. Emerging themes in epidemiology 4, 1 (2007), 1–8.
- HIV disclosure among women of African descent: Associations with coping, social support, and psychological adaptation. AIDS and Behavior 4 (2000), 147–158.
- Shifting the paradigm: using HIV surveillance data as a foundation for improving HIV care and preventing HIV infection. The Milbank Quarterly 91, 3 (2013), 558–603.
- Maria Dolores C Tongco. 2007. Purposive sampling as a tool for informant selection. (2007).
- Developing a point-of-care electronic medical record system for TB/HIV co-infected patients: experiences from Lighthouse Trust, Lilongwe, Malawi. BMC research notes 9, 1 (2016), 1–10.
- Collecting maternal health information from HIV-positive pregnant women using mobile phone-assisted face-to-face interviews in Southern Africa. Journal of medical Internet research 15, 6 (2013), e2207.
- Tiffany Veinot. 2009. “A lot of people didn’t have a chance to support us because we never told them” Stigma management, information poverty and HIV/AIDS information/help networks. Proceedings of the American Society for Information Science and Technology 46, 1 (2009), 1–20.
- Privacy Unraveling Around Explicit HIV Status Disclosure Fields in the Online Geosocial Hookup App Grindr. Proc. ACM Hum.-Comput. Interact. 2, CSCW, Article 181 (nov 2018), 22 pages. https://doi.org/10.1145/3274450
- Evaluating ’Prefer Not to Say’ Around Sensitive Disclosures. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems (Honolulu, HI, USA) (CHI ’20). Association for Computing Machinery, New York, NY, USA, 1–13. https://doi.org/10.1145/3313831.3376150
- Signal Appropriation of Explicit HIV Status Disclosure Fields in Sex-Social Apps Used by Gay and Bisexual Men. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (Glasgow, Scotland Uk) (CHI ’19). Association for Computing Machinery, New York, NY, USA, 1–15. https://doi.org/10.1145/3290605.3300922
- Experience implementing a point-of-care electronic medical record system for primary care in Malawi. In MEDINFO 2010. IOS Press, 96–100.
- Ambulatory Clinic Exam Room Design with respect to Computing Devices: A Laboratory Simulation Study. IISE Transactions on Occupational Ergonomics and Human Factors 6, 3-4 (2018), 165–177. https://doi.org/10.1080/24725838.2018.1456988 arXiv:https://doi.org/10.1080/24725838.2018.1456988
- Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users. BMC medical informatics and decision making 12, 1 (2012), 1–10.
- Improving the efficiency of monitoring adherence to antiretroviral therapy at primary health care level: a case study of the introduction of electronic technologies in Guguletu, South Africa. Development Southern Africa 24, 4 (2007), 607–621.
- “Should I Visit the Clinic”: Analyzing WhatsApp-Mediated Online Health Support for Expectant and New Mothers in Rural India. In Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems (New Orleans, LA, USA) (CHI ’22). Association for Computing Machinery, New York, NY, USA, Article 296, 20 pages. https://doi.org/10.1145/3491102.3517575
- Illustrating the Gaps and Needs in the Training Support of Community Health Workers in India. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (Yokohama, Japan) (CHI ’21). Association for Computing Machinery, New York, NY, USA, Article 231, 16 pages. https://doi.org/10.1145/3411764.3445111
- Factors related to health information exchange participation and use. Journal of medical systems 38 (2014), 1–9.
- Understanding implementation barriers in the national scale-up of differentiated ART delivery in Uganda. BMC health services research 20, 1 (2020), 1–16.
- Zahra Zamani and Esperanza C. Harper. 2019. Exploring the Effects of Clinical Exam Room Design on Communication, Technology Interaction, and Satisfaction. HERD: Health Environments Research & Design Journal 12, 4 (2019), 99–115. https://doi.org/10.1177/1937586719826055 arXiv:https://doi.org/10.1177/1937586719826055 PMID: 30719926.
- Patient challenges and needs in comprehending laboratory test results: mixed methods study. Journal of medical Internet research 22, 12 (2020), e18725.
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