Sharing results with participants (and community) in malaria related research: Perspectives and experience from researchers.

Abstract

Results-sharing with participants or their communities after the completion of research is an essential element of ethical research. The main objective of this study was to identify and document current practice of trial result dissemination, to explore attitudes among trialists towards result dissemination and to better understand previous experiences and barriers to returning results to participants. This mixed-methods study used a sequential exploratory design with two phases: i) an initial qualitative phase to explore the topic and to inform the quantitative data collection, ii) a quantitative survey. Findings from the survey and interviews were triangulated and presented to a network of clinical malaria researchers for validation. A total of 11 semi-structured interviews (SSIs) were conducted using an interview guide. The quantitative survey had a response rate of 19.9% (42/211). Disseminating results to participants after clinical trials was deemed critical for ethical malaria related research, with 38.1% indicating it as extremely important and 45.2% rating it as mostly important. Most respondents referred to the dissemination of results to policymakers and wider stakeholders as important aspects of research translation. The practice of patient or community engagement was prioritized in the pre-trial period and during the trial for obvious instrumental goals of improving retention, coverage and adherence, but much less priority was given to the post-trial period. The main reason for poor dissemination practice was the notion that the time lag between study participation and the availability of results was too long (42.4%). Other reasons included the assumption that the community was not interested (36.4%), and financial restraints (9.1%). The rich qualitative data revealed detailed accounts of operational, cultural, educational and economic aspects that pose further barriers to results-sharing, including limited knowledge about best practice. Better planning which includes adequate financial resourcing is required for meaningful dissemination of results to study participants. Improved institutional guidance and more stringent requirements by funders could support researchers who are generally interested and willing to complete the process. Best practice methods to conduct such dissemination remains to be explored.