Digital data ethics in low- and middle-income countries: The road ahead

Author(s): Sam Wambugu, James C. Thomas, Denise Johnson, Christina Villella

Year: 2019

Abstract:

Background: Digital health contributes to strong health information systems, facilitating improved access to healthcare and quality of care, and decreased health system costs. Health data are at risk of tampering by malicious actors or inadvertent access if stored on porous and poorly maintained information systems. The thoughtful application of information technology in the health sector requires the careful integration of legal, technological, medical, and societal perspectives to safeguard the privacy of individuals and populations.

Methods: With support from the United States Agency for International Development (USAID), MEASURE Evaluation conducted an assessment of health data security, privacy, and confidentiality practices through a literature review and key informant interviews with stakeholders in the health sector in Kenya and Tanzania.

Results: Stakeholders in the two countries expressed a keen interest in the need to address the issues of data security, privacy, and confidentiality. All agreed that digital health data ethics, including security and privacy, are important but are uncharted territory in these countries. The study revealed several issues: inadequate capacity to effectively implement secure information systems; weak or non-existent legal frameworks for data protection; and lack of a dedicated unit in ministries of health, with appropriately skilled staff, to oversee data ethics. Participants in Kenya and Tanzania called for the establishment of an institutional framework for data governance that would oversee digital health data ethics issues.

Conclusions: Maintaining client confidentiality in the digital era is difficult, especially in the health sector where data are among the most sought-after by hackers. Study participants in Kenya and Tanzania stated that they need tools and expertise to help assess the preparedness of existing systems and their conformity with the changing digital health landscape; and awareness raising among health policy planners and decision makers on the need for guidance on digital data ethics. Discussions on these topics and lessons from digital health projects provide important evidence for developing or updating national digital health frameworks. This article highlights the importance of bringing data ethics to the forefront of efforts to integrate digital health in health service delivery management in low- and middle-income countries.