The Recommendations for Community Engagement offer a step-by-step approach to developing and maintaining a Community Advisory Board (CAB), but many of the strategies can be applied to other types of community outreach. The Recommendations were developed together by community representatives and National Institute of Allergy and Infectious Diseases (NIAID) staff. The Recommendations help research staff and community representatives expand and deepen existing partnerships and start new ones.
The Recommendations define the roles and responsibilities of the community and research staff, consider the social and cultural context of the research, emphasize the importance of sustainable community engagement, and provide strategies for working with individuals who have been marginalized or underrepresented in research. The goal of the Recommendations is to increase community engagement in all stages of clinical research.
Stage(s) of Research Process:
- Study Planning: The Recommendations define the roles and responsibilities for community members and researchers. The Recommendations emphasize that community members should participate in the protocol development process, including review of study protocols, informed consent plans, and other related documents.
- Study Conduct: The Recommendations include an emphasis on consistent collaboration between researchers and community representatives throughout the study. This includes providing each other feedback and making sure that the study is being implemented as planned (e.g., in agreement with local and national regulatory and ethical standards). The Recommendations also suggest ongoing training for research staff on how to engage community members in the research process.
- Post-Study: CAB members play a critical role in ensuring that research findings reach all members of the community, particularly those who will be most directly affected. The Recommendations show how the CAB can play an active part in these communications by making sure messages are clear, and by providing advice on appropriate methods of communication.
Who Might Benefit:
- Researchers
- Can use these Recommendations to develop and maintain their own CAB.
- Can also use these Recommendations to improve community members’ engagement in the research process through other methods.
- Can use the Recommendations to better understand the importance of community engagement, how to build and maintain positive partnerships with community members, and how to increase the inclusion of community members’ perspective on all stages of research.
Key Takeaways and Examples in Practice:
- The Recommendations have been used successfully in HIV clinical trials for multiple years and can be adapted for other types of research.
- By using the Recommendations from the start of the research process, the Community Engagement team of the HIV Vaccine Trials network was able to quickly engage with new populations for the COVID-19 vaccine efficacy trials funded by the US government.
- By applying these community engagement recommendations, the COVID-19 vaccine efficacy trials enrolled diverse participants. 47% of participants enrolled in the COVID-19 vaccine trials were from Black, Indigenous, and People of Color communities, thanks to the use of these community engagement principles.
This work was done with the direct support by each of the following partners who advance this work:
- Division of AIDS at NIAID
- NIAID Office of HIV/AIDS Network Coordination:
- Community Partners
Keywords: Methods of Engagement; Collaborative Decision-Making; Sustainable Engagement & Capacity Building; Researchers
Links to Relevant Resources:
- Recommendations for Community Engagement in HIV Research
- Resources for Inclusive Community Involvement (HIV/AIDS Network Coordination)
- Publication Summarizing Recruitment in COVID-19 Vaccine Efficacy Trials
- Division of AIDS at NIAID’s Community Engagement Website
- NIAID Office of HIV/AIDS Network Coordination Website
- Information about the Community Partners Working with the NIH HIV/AIDS Clinical Trials Network
Definitions for each engagement objective can be found in the glossary.