Identifying the motivators, benefits and barriers to sharing participant-level data and samples: results from an international online survey of acute febrile illness cohort teams.

backgroundRapid and equitable sharing of de-identified, participant-level clinical-epidemiological (clin-epi) data, human biological samples, and human genetic data is crucial for an effective response to acute febrile illnesses (AFIs), particularly during epidemics. Despite increasing calls to share participant-level data and samples as part of the public health response to epidemics, several barriers continue to hinder this process. This study aimed to identify the key benefits, motivators and barriers influencing data and sample sharing among AFI cohort research teams, examining differences between epidemic and non-epidemic settings and exploring variations in perceptions across different research roles within cohort teams.

methodsWe conducted a cross-sectional online survey of researchers managing AFI cohorts. Participants were recruited via cohort principal investigators (PIs) identified through global AFI research consortia and cohort lists. The survey assessed best and worst sharing experiences, perceived motivators and benefits of sharing, and barriers to sharing participant-level clin-epi data, human biological samples, and human genetic data. Best and worst sharing experiences were classified and assessed using the political, ethical, administrative, regulatory, and legal (PEARL) framework. The Wilcoxon signed-rank test was used to compare the importance of different categories of barriers between epidemic and non-epidemic settings. Analyses were also stratified by participant role (PIs vs non-PIs) to explore differences in perceptions of motivators, benefits, and barriers.

resultsWe received 78 responses from research teams representing 62 AFI cohorts across 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. Respondents most commonly cited international scientific collaborations as the best experience and lack of benefit sharing with them as data and sample providers as the worst experience related to data and sample sharing. Important motivators and benefits included increased opportunities for collaboration, authorship, and funding, as well as enhanced insights and reduced duplication of research efforts. Regulatory and technical barriers were identified as very important in both epidemic and non-epidemic settings. Technical barriers were consistently important for both data and samples regardless of the epidemic context. Only regulatory barriers to sharing human biological samples were found to be of significantly higher importance in epidemic vs non-epidemic settings (p < 0.05). Differences emerged between PIs and non-PIs in perceived motivators, benefits; PIs more frequently highlighted authorship opportunities and funding-related collaborations as key motivators and benefits of sharing. Economic and motivational barriers to sharing were perceived to be more important by PIs than non-PIs.

conclusionsAddressing regulatory and technical barriers, particularly during epidemics, is critical for improving data and sample sharing among AFI researchers. Explicitly incorporating motivators and benefits valued by cohort researchers, including opportunities for collaboration, authorship, and funding, into data-sharing practices, alongside targeted strategies addressing differences between PIs and non-PIs, could foster more equitable and effective data and sample sharing practices.