Research participants’ views on sharing health-related data in South Africa.

Abstract

Sharing of health-related data is increasingly recognised as a democratic imperative and a marker of responsible science. However, little is known about how research participants perceive data sharing. This study investigated research participants' views on the sharing of health-related data and analysed two different empirical sources of data: (i) the review of twenty empirical papers using framework analysis and (ii) face-to-face accounts of sixteen respondents from focus group discussions from two independent clinical cohorts in South Africa. The thematic insights were created to provide critical points of ethical comparison between both sources, the papers themselves and the face-to-face accounts given by participants. Three different methods were employed to generate data sources: (i) the matrix method, to review grey literature, official gazette reports, peer-reviewed articles, and scientific textbooks, (ii) framework analysis to review primary sources, and (iii) lastly, data were gathered from two focus group discussions (FGDs) and processed using thematic analysis. Democratic deliberation assisted in eliciting participants’ thoughts on ethical issues and helped solicit participants’ opinions on the research questions. Suggestions for additional research on this topic are to develop an understanding of appropriate communities’ informational needs to reassure individuals and community members of democratic engagement with systems protecting their constitutional rights. The sharing of health research data was perceived as contributing to greater development and improvement in health care in Africa.