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HIV Client Perspectives on Digital Health in Malawi

Lisa Orii, Caryl Feldacker, Jacqueline Madalitso Huwa, Agness Thawani, Evelyn Viola, Christine Kiruthu-Kamamia, Odala Sande, Hannock Tweya, Richard Anderson

TL;DR

The paper investigates HIV clients' perspectives on data security and privacy in Malawi's Lighthouse health system, using focus groups to map privacy concerns, trust in health authorities, and understanding of data flows in EMR and offline tablet tools. It finds broad privacy concerns centered on unintended disclosure, substantial trust in Lighthouse and MoH to safeguard data, and general acceptance of digital data collection despite some uncertainty about security mechanisms. The study translates these findings into pragmatic recommendations for building privacy-conscious digital health systems in LMICs, including clear communication of data use, education about data types (aggregate vs client-level), and security standards aligned with global governance. The results have practical implications for Malawi's MoH and similar LMIC programs seeking to scale eHealth while preserving patient confidentiality and engagement.

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.

HIV Client Perspectives on Digital Health in Malawi

TL;DR

The paper investigates HIV clients' perspectives on data security and privacy in Malawi's Lighthouse health system, using focus groups to map privacy concerns, trust in health authorities, and understanding of data flows in EMR and offline tablet tools. It finds broad privacy concerns centered on unintended disclosure, substantial trust in Lighthouse and MoH to safeguard data, and general acceptance of digital data collection despite some uncertainty about security mechanisms. The study translates these findings into pragmatic recommendations for building privacy-conscious digital health systems in LMICs, including clear communication of data use, education about data types (aggregate vs client-level), and security standards aligned with global governance. The results have practical implications for Malawi's MoH and similar LMIC programs seeking to scale eHealth while preserving patient confidentiality and engagement.

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.
Paper Structure (43 sections, 1 figure)

This paper contains 43 sections, 1 figure.

Table of Contents

  1. Introduction
  2. Background
  3. Related Work
  4. Fear of Inadvertent Disclosure of Positive HIV Status
  5. Clients’ Trust in the Health System
  6. Client Perspectives on Devices at the Point-of-Care
  7. Methods
  8. Setting
  9. Participant Recruitment
  10. Study Procedure
  11. Data Analysis
  12. Ethical Considerations
  13. Findings
  14. Disclosure and Privacy
  15. Selective Disclosure
  16. ...and 28 more sections

Figures (1)

  • Figure 1: A computer at the facility used as an EMR access point at the reception desk by Lighthouse receptionists (left), a tablet used during a client's CBC appointment (middle), and health passport booklets that ART clients bring to appointments (right).