Health research participants’ preferences for receiving research results

Abstract

Background: Participants in health research studies typically express interest in receiving the results from the studies in which they participate. However, participants’ preferences and experiences related to receiving the results are not well understood. In general, the existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. Methods: This study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate the results, their satisfaction with the results, and when and how they would like to receive research results from future studies. In all, 70,699 ResearchMatch registrants were notified of the study’s topic. Of the 5207 registrants who requested full information about the study, 3381 respondents completed the survey. Results: Approximately 33% of respondents with previous health research participation reported receiving the results. Approximately half of respondents with previous research participation reported no opportunity to request the results. However, almost all respondents said researchers should always or sometimes offer the results to participants. Respondents expressed particular interest in the results related to their (or a loved one’s) health, as well as information about studies’ purposes and any medical advances based on the results. In general, respondents’ most preferred dissemination methods for the results were email and website postings. The least desirable dissemination methods for the results included Twitter, conference calls, and text messages. Across all the results, we compare the responses of respondents with and without previous research participation experience and those who have worked in research organizations versus those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that the results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results’ information included in the survey. Conclusion: We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants’ preferences for receiving the results. The study’s findings highlight the potential for inconsistency between respondents’ expressed preferences to receive specific types of results via specific methods and researchers’ unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants’ preferences for receiving research results.