Health research participants are not receiving research results: a collaborative solution is needed

Abstract

Health research participants want the results of the studies in which they participate but do not typically receive them. Researchers generally express support for sharing results with participants but, in practice, may be unprepared or unwilling to do so. Many funders call for increased dissemination of research results beyond academic and clinical audiences, but few funders sponsor research to improve result sharing with participants. Although the solution appears straightforward (e.g., funders could incentivize researchers to share results with participants), there are critical gaps in knowledge that suggest the need for a more deliberate approach. For example, what ethical or practical concerns discourage researchers from returning results to participants? What exactly do participants plan to do with the results that they would like to receive? What are the best channels of communication for sharing results with particular participant populations? To address these knowledge gaps, we argue for a collaborative process to develop a research agenda related to result sharing with participants. With support and encouragement by funders, such research should evaluate the effects of different types of results (and results from different types of studies) on participants' behaviors, attitudes, and emotions; it should also examine the researchers' ethical, financial, logistical, methodological, and skill-related concerns and constraints related to sharing results with participants. Over time, collaborative research between researchers and participants can yield an evolving set of evidence-based guidelines for ethical, effective result sharing with participants.