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Returning individual research results to participants: Values, preferences, and expectations
Journal article   Open access   Peer reviewed

Returning individual research results to participants: Values, preferences, and expectations

Denise Kent, Michelle Villegas-Downs, Marina Del Rios, Michael Freedman, Jerry Krishnan, Martha Menchaca, Crystal Patil, Jenny Sculley, Nathan Tintle and Lynn Gerald
Journal of clinical and translational science, Vol.8(1), e126
09/01/2024
DOI: 10.1017/cts.2024.568
PMCID: PMC11428116
PMID: 39345708
url
https://doi.org/10.1017/cts.2024.568View
Published (Version of record) Open Access

Abstract

Background/objective:Disclosing individual research results to participants is not standard practice. The return of individual research results to participants may increase recruitment, retention, and engagement in research. This study’s objective was to explore the preferences, expectations, and experiences of research participants receiving individual research results.Methods:A mixed-methods approach, consisting of semi-structured interviews and a health literacy assessment, was used with participants enrolled in a cohort study. The interviews were analyzed to produce an understanding of current experiences. Using descriptive analyses, responses were compared to identify alignments and divergences among participants.Results:Forty-three English-speaking and 16 Spanish-speaking participants enrolled. Ninety-eight percent of participants wanted to receive their individual research results. Seventy-five percent of participants reported they shared results with their healthcare providers. More participants aged 18–65 reported the need to follow up with their provider (70%) as compared to participants > 65 (20%). Two-thirds of participants reported a positive experience receiving their research results; however, 22% reported anxiety and worry. Most participants (69%) described the electronic medical record (EMR) as their preferred method for receiving their results. Yet only 50% of Spanish speakers preferred receiving research results through the EMR compared to 77% of English speakers. Participants with low health literacy preferred receiving study results in person or by phone.Conclusion:Research participants value receiving their individual research results, and this may increase recruitment and retention within the research enterprise. While more research is needed, the lessons learned from this study lay the groundwork for developing best practices and policies around the return of individual research results.
 Electronic Health Records Electronic medical records Enrollments Ethnicity Health education Health literacy Interviews Medical research Minority & ethnic groups Qualitative research Race Researchers Retention

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