Return of results is important to heterogeneous research participants: A single-site survey

Clinical researchers at U.S. academic health centers are becoming more attuned to the perspectives and values of research participants, seeking to partner with them to enhance their satisfaction and improve recruitment strategies.

We surveyed current or recent participants on their perspectives about the return of study results. Through a multi-site consortium of academic medical centers assessing the experiences of research participants using an online satisfaction survey, we added three questions to our institution's version of the survey to assess the value placed on return of research results (RoR) to current or recent adult participants. Survey participants were offered anonymous participation using four different recruitment mechanisms ("sites") hosted by our institution. Most recruitment was disease-agnostic.

A total of 506 heterogeneous respondents completed the survey. Although differences were found across recruitment sites, 73% of all participants desired and 49% expected to receive their own RoR, while 61% expected to receive the study's aggregate results. The importance of receiving their own results was especially salient for respondents from historically underserved communities, identifying as non-white, Latino/Hispanic, primarily Spanish-speaking, older or less educated. Respondents' sex was not a significant factor in preferences for return of results.

Our results indicated our research participants' expectations and perceived value of receiving the results from studies in which they participated, especially their individual results. This study provides direct evidence of the desires of our research participant community and suggests that institutional support for the return of study results would better serve participants' interests and expectations in future research.