Qualitative study of participants' perceptions and preferences regarding research dissemination

Purvis, Rachel S.; Abraham, Traci H.; Long, Christopher R.; Stewart, M. Kathryn; Warmack, T. Scott; McElfish, Pearl A.

doi:10.1080/23294515.2017.1310146

Cited by 53 publications

(55 citation statements)

References 29 publications

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“…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.…”

Section: Discussionmentioning

confidence: 99%

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Assessing research participant preferences for receiving study results

Cook

Mayers

Goggins

et al. 2019

J. Clin. Trans. Sci.

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AbstractIntroduction:Dissemination of results to research participants is largely missing from the practices of most researchers. Few resources exist that describe best practices for disseminating information to this important stakeholder group.Methods:Four focus groups were conducted with a diverse group of individuals. All participants were part of a Patient-Centered Outcomes Research Institute-funded survey study. Focus groups aimed to identify participants’ preferences about receiving research results and their reactions to three different dissemination platforms.Results:Four focus groups with 37 participants were conducted, including: (1) adults with one comorbidity, at least a college education, and high socioeconomic status (SES); (2) adults with one comorbidity, less than a college education, and lower SES; (3) adults with low health literacy and/or numeracy; and (4) Black or African American adults. Participants discussed their preferences for research results delivery and how each of the platforms met those preferences. This included information needs as they relate to content and scope, including a desire to receive both individual and aggregate results, and study summaries. Email, paper, and website were all popular avenues of presentation. Some desired a written summary, and others preferred videos or visual graphics. Importantly, participants emphasized the desire for having a choice in the timing, frequency, and types of results.Conclusion:Research participants prefer to receive research results, including study impact and key findings, disseminated to them in an engaging format that allows choice of when and how the information is presented. The results encourage new standards whereby research participants are considered a critical stakeholder group.

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Section: Discussionmentioning

confidence: 99%

“…Research participants have consistently expressed their desire to receive research results back [7,8,10]. Yet, despite calls for action, many questions remain regarding the return of research results to study participants, including how, when, and what types of information should be returned [11].…”

Section: Introductionmentioning

confidence: 99%

Assessing research participant preferences for receiving study results

Cook

Mayers

Goggins

et al. 2019

J. Clin. Trans. Sci.

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“…Health research participants are generally interested in receiving the results of the studies in which they participate [1][2][3][4][5][6][7]. Certain funding agencies, such as the Patient-Centered Outcomes Research Institute and Agency for Healthcare Research and Quality, also emphasise the importance of disseminating research results to non-academic audiences, which can include participants and their communities [8][9][10].…”

Section: Introductionmentioning

confidence: 99%

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

Long

Purvis

Flood‐Grady

et al. 2019

Health Res Policy Sys

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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.

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“…Participants want to receive study updates and results from the research in which they participate, [1][2][3][4][5][6][7] and researchers generally support the concept of returning results to study participants [8][9][10][11][12][13]. However, most researchers report that they do not return results to participants [7,9,11,12].…”

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confidence: 99%

“…Disseminating study results beyond scientific publication can raise public awareness about the importance of research and increase trust in the research process among current and prospective participants [10]. Incongruence between participant expectations for receiving study results and researcher practices for disseminating study findings may deter individuals from participating in future studies [6]. Thus, there is a need to investigate the reasons health researchers are not sharing results with study participants.…”

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confidence: 99%

Characterizing health researcher barriers to sharing results with study participants

McElfish

Long

James

et al. 2019

J. Clin. Trans. Sci.

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Introduction:Research participants want to receive results from studies in which they participate. However, health researchers rarely share the results of their studies beyond scientific publication. Little is known about the barriers researchers face in returning study results to participants.Methods:Using a mixed-methods design, health researchers (N = 414) from more than 40 US universities were asked about barriers to providing results to participants. Respondents were recruited from universities with Clinical and Translational Science Award programs and Prevention Research Centers.Results:Respondents reported the percent of their research where they experienced each of the four barriers to disseminating results to participants: logistical/methodological, financial, systems, and regulatory. A fifth barrier, investigator capacity, emerged from data analysis. Training for research faculty and staff, promotion and tenure incentives, and funding agencies supporting dissemination of results to participants were solutions offered to overcoming barriers.Conclusions:Study findings add to literature on research dissemination by documenting health researchers’ perceived barriers to sharing study results with participants. Implications for policy and practice suggest that additional resources and training could help reduce dissemination barriers and increase the return of results to participants.

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Qualitative study of participants' perceptions and preferences regarding research dissemination

Cited by 53 publications

References 29 publications

Assessing research participant preferences for receiving study results

Assessing research participant preferences for receiving study results

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

Characterizing health researcher barriers to sharing results with study participants

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