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Returning individual research results to participants: Values, preferences, and expectations
Denise A Kent1,2, Michelle Villegas-Downs3, Marina Del Rios4
1Department of Biobehavioral Nursing Science, University of Illinois Chicago, Chicago, IL, USA.
Journal of Clinical and Translational Science
|September 30, 2024
Summary
Most research participants want to receive their individual results, which can improve study engagement. While generally positive, some participants experienced anxiety, highlighting the need for careful result delivery strategies.
Area of Science:
- Clinical Research
- Participant Engagement
- Health Outcomes
Background:
- Returning individual research results to participants is not a standard practice.
- This practice may enhance participant recruitment, retention, and overall engagement in research studies.
Purpose of the Study:
- To investigate the preferences, expectations, and experiences of research participants regarding the receipt of individual research results.
Main Methods:
- A mixed-methods approach was employed, combining semi-structured interviews and health literacy assessments.
- Participants were enrolled in a cohort study, and interview data were analyzed thematically.
- Descriptive analyses compared participant responses to identify commonalities and differences.
Main Results:
- Ninety-eight percent of participants desired their individual research results.
- The electronic medical record (EMR) was the preferred delivery method for most English speakers, while Spanish speakers and those with low health literacy preferred in-person or phone delivery.
- Two-thirds reported positive experiences, but 22% experienced anxiety; 75% shared results with healthcare providers.
Conclusions:
- Participants value receiving individual research results, potentially boosting research participation.
- Findings provide a foundation for developing best practices and policies for returning individual research results effectively.
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