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Engaging Sexual and Gender Minority (SGM) Communities for Health Research: Building and Sustaining PRIDEnet
Journal of Community Engagement and Scholarship
|August 16, 2024
Summary
Building PRIDEnet, a national network, enhances health research engagement for sexual and gender minority (LGBTQIA+) communities. This infrastructure fosters trust and broad participation, crucial for reducing health disparities.
Area of Science:
- Biomedical research
- Community-engaged research (CEnR)
- Health disparities research
Background:
- Sexual and/or gender minority (LGBTQIA+) communities face underrepresentation and health disparities in research.
- Past mistreatment, discrimination, and stigma in healthcare settings hinder LGBTQIA+ participation.
- Effective engagement strategies are vital for inclusive health research and policy development.
Purpose of the Study:
- To describe the development of PRIDEnet, a national network fostering LGBTQIA+ involvement in health research.
- To establish a community-engaged research (CEnR) infrastructure for LGBTQIA+ individuals.
- To identify effective engagement approaches for underserved communities in biomedical research.
Main Methods:
- Developed PRIDEnet based on community-engaged research (CEnR) principles.
- Implemented relationship-building and digital communication strategies.
- Created a CEnR infrastructure to support multiple research projects, including The PRIDE Study and NIH's All of Us Research Program.
Main Results:
- PRIDEnet successfully engages thousands of LGBTQIA+-identified individuals nationwide.
- The network offers low-threshold participation opportunities, enabling individuals to join studies and shape research.
- Established a sustainable CEnR infrastructure for ongoing community involvement.
Conclusions:
- Adaptable infrastructure and sustained relationships are key for long-term engagement.
- A combination of high-touch (trust-building) and broad-reach (data collection) activities is effective.
- Diverse teams with lived experience and substantive community contributions are essential for equitable research.
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