Background
Participants in health research studies typically express interest in receiving results from the studies in which they participate. However, participants’ preferences and experiences related to receiving results are not well understood. In general, existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations.
Methods
The present 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 results, their satisfaction with results, and when and how they would like to receive research results from future studies. 70,699 ResearchMatch registrants were notified of the study’s topic. Of the 5,207 registrants who requested full information about the study, 3,381 respondents completed the survey.
Results
Approximately 33% of respondents with previous health research participation reported receiving results. Approximately half of respondents with previous research participation reported no opportunity to request results. However, almost all respondents said researchers should always or sometimes offer results to participants. Respondents expressed particular interest in 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 results were email and website postings. The least desirable dissemination methods for results included Twitter, conference calls, and text messages. Across all results, we compare the responses of respondents with and without previous research participation experience, and those who have worked in research organizations vs. those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that 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.
Conclusions
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 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.