Health researchers’ experiences, perceptions and barriers related to sharing study results with participants

Abstract

Background: Although research participants are generally interested in receiving results from studies in which they participate, health researchers rarely communicate study findings to participants. The present study was designed to provide opportunity for a broad group of health researchers to describe their experiences and concerns related to sharing results (i.e. aggregate study findings) with research participants. Methods: We used a mixed-methods concurrent triangulation design, relying on an online survey to capture health researchers' experiences, perceptions and barriers related to sharing study results with participants. Respondents were health researchers who conduct research that includes the consent of human subjects and hold a current appointment at an accredited academic medical institution within the United States. For quantitative data, the analytic strategy focused on item-level descriptive analyses. For the qualitative data, analyses focused on a priori themes and emergent subthemes. Results: Respondents were 414 researchers from 44 academic medical institutions; 64.5% reported that results should always be shared with participants, yet 60.8% of respondents could identify studies in which they had a leadership role where results were not shared. Emergent subthemes from researchers' reasons why results should be shared included participant ownership of findings and benefits of results sharing to science. Reasons for not sharing included concerns related to participants' health literacy and participants' lack of desire for results. Across all respondents who described barriers to results sharing, the majority described logistical barriers. Conclusions: Study findings contribute to the literature by documenting researchers' perspectives and experiences about sharing results with research participants, which can inform efforts to improve results sharing. Most respondents indicated that health research results should always be shared with participants, although the extent to which many respondents described barriers to results sharing as well as reported reasons not to share results suggests difficulties with a one-size-fits-all approach to improving results sharing.

Assessing research participant preferences for receiving study results

“…While trust was not specifically addressed in the focus groups, some participants mentioned that returning study findings could increase one's likelihood to recommend participating in research. Given the multitude of well-known, documented disparities in research participation [22][23][24][25][26][27], disseminating research results to participants could be one meaningful way to build trust and encourage future research participation [6,9,10,28,29]. Future research should assess how returning study findings impacts participants' trust and likelihood of participating in future research studies.…”

“…Research participants are a particularly important stakeholder group given that without them, research would not proceed. While research communities generally support returning findings to participants [3][4][5][6][7], this is not a common practice among researchers [6,8]. This may be due in part to limited knowledge about ways to do so, uncertainty about the types of information to return, ethical concerns, financial constraints, or other barriers to dissemination [4,6,8,9].…”

Citizen Science Models in Health Research: an Australian Commentary

“…Other related study findings contribute to the literature by documenting researchers' perspectives and experiences about sharing results with research participants. One such study surveyed health researchers in which the majority of respondents indicated that health research results should always be shared with participants [85]; although the described barriers to results sharing and various reported reasons not to share results suggest difficulties with a "one-size-fits-all" approach to improving results sharing.…”

“…Legal jurisdictional areas may differ in terms of the extent of sharing of results with participants. In the U.S., for instance, it is not normative for health research ethics review boards to encourage health researchers to share aggregate study findings in contrast to practices in Australia, for example [85]. A poll conducted by Research Australia in 2019 indicated that a majority of Australians were willing to share their personal health information for research purposes, in order to advance health and medical research (78%), support healthcare providers in improving patient care (68%), and to assist public health officials in tracking diseases, disabilities and their causes (61%) [86].…”

Characterizing health researcher barriers to sharing results with study participants

“…A mixed-methods concurrent triangulation design [17][18][19][20][21][22][23], with a survey that collected quantitative and qualitative data simultaneously, assessed the perceptions and barriers health researchers experience with the dissemination of results to study participants. The study protocol and general findings are provided elsewhere [24,25]. This article focuses on an in-depth examination of the perceived barriers as they were described by survey respondents.…”