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Perceptions of research participation among underrepresented groups: Insights using freelisting methodology
Tamar Klaiman1,2,3,4, Jasmine A Silvestri1,2, Emma Britez Ferrante1,2
1Behavioral Economics to Transform Trial Enrollment Representativeness (BETTER) Center, American Heart Association Strategically Focused Research Network on the Science of Diversity in Clinical Trials, Philadelphia, Pennsylvania, United States of America.
Plos One
|July 1, 2026
Summary
Clinical research participation views vary among underrepresented groups. Proactive outreach and addressing fears are key to improving representation and health equity.
Area of Science:
- Clinical Research
- Health Equity
- Qualitative Methodology
Background:
- Clinical research enrollment and retention are low in Black, Hispanic or Latinx, women, and rural populations, worsening health disparities.
- Mechanisms driving this underrepresentation across diverse groups are not well understood.
- Freelisting, a qualitative method, has not been systematically used to explore research participation barriers in these populations.
Purpose of the Study:
- To investigate perspectives on clinical research participation among underrepresented populations.
- To inform the development of culturally-responsive recruitment and retention strategies.
- Utilize freelisting methodology to capture diverse viewpoints.
Main Methods:
- Conducted a web-based freelisting survey with 101 adults from underrepresented groups (Black, Hispanic or Latinx, women, rural) in the Philadelphia, Atlanta, and Washington, DC metro areas.
- Participants responded to prompts about research and participation, with terms analyzed for salience, sentiment, and demographic variations.
- Employed Anthropac software to calculate salience indices and assess term importance within and across groups.
Main Results:
- Shared salient terms included 'study,' 'knowledge,' 'search,' and 'scary,' with generally positive sentiment towards being approached for research.
- Sentiment about participation varied, showing more negative terms among those never invited to research.
- 'Research misconduct' was uniquely salient among Black participants, and prior research experience correlated with more positive sentiments.
Conclusions:
- Underrepresented populations express mixed views on clinical research, with heightened negativity among those never approached.
- Targeted outreach to naive individuals and addressing negative perceptions like fear are crucial for enhancing research representativeness.
- Further research is needed to understand the context and mechanisms behind these sentiments for improved recruitment strategies.
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