Understanding the motivators and barriers to sharing participant-level data and samples: A cross-sectional study with acute febrile illness cohort teams

Abstract

Background Sharing de-identified, participant-level clinical-epidemiological data, human biological samples, and human genetic data facilitates understanding diseases and the development of prevention strategies, diagnostics, and treatments. While there are increasing calls to share participant-level data and samples both during and outside the public health response to epidemics, several barriers remain. Methods We administered a cross-sectional, online survey to research teams that manage acute febrile illness (AFI) cohorts. We included questions on the researchers’ best and worst experiences, motivators, benefits, and barriers to sharing de-identified participant-level clin-epi data, human biological samples, and human genetic data during and outside epidemics. Using the political, ethical, administrative, regulatory, and legal (PEARL) framework, we classified the best and worst sharing experiences and employed the Wilcoxon signed-rank test to compare barriers between epidemic and non-epidemic settings. Results We received 78 responses to the survey from cohort study teams in 23 countries. Most respondents were cohort PIs, over 45, and advanced in their careers. Most cohorts were based in South America or Central America, focused on multiple pathogens, and collected and shared multiple data types and samples. Scientific collaborations with researchers outside their country were the most commonly reported best data or sample-sharing experience. Lack of benefit sharing was the most commonly reported worst sharing experience. Benefits and barriers to sharing did not vary significantly by data type or whether sharing happened during or outside of pandemics, except for regulatory barriers to sharing human biological samples which were significantly more important in epidemic than in non-epidemic settings. Conclusions The study highlights the need for stakeholders to improve data and sample-sharing practices for AFI researchers in LMICs, emphasising ethical considerations, benefit sharing, and streamlined administrative processes in both epidemic and non-epidemic settings.