The Division of AIDS (DAIDS) at the National Institute of Allergy and Infectious Diseases (NIAID) is committed to engaging and involving community at every stage of the research process. The NIH-funded HIV/AIDS clinical trials research networks and sites, and other funded research programs primarily use Community Advisory Boards (CAB) to do this. This has shown to be an effective way to solicit community input on protocol design and conduct and has ensured that community concerns are heard. That said, other engagement approaches may be appropriate and necessary to supplement CAB activities. Using a broad approach to engagement can help ensure diverse stakeholder input and keep communities apprised of research plans and progress. DAIDS has several tools and resources available on the DAIDS Learning Portal (DLP) designed to help communities understand clinical trials research and the role of CABs so that they can be more effective in their role. There are also resources that can assist site staff as they seek to establish and work with a CAB, and in their general community outreach, educational, and consultative activities. Combined with materials available through the Office of HIV/AIDS Network Coordination (HANC) and other organizations, (e.g., AVAC), these materials can enhance community engagement practices and outcomes.
Related Training Courses on the DLP
|Name||Description and Audience|
|Community Advisory Board (CAB)||This training describes a community advisory board (CAB), including who comprises a CAB and the role it plays in clinical research. The course is geared toward the community but is also valuable to CRS staff working with the CAB.|
|Understanding Clinical Research||This training describes clinical research and related components of the research process. It is appropriate for CAB and community members.|
|Research Ethics and Informed Consent||This course provides an overview of ethics in clinical research and the informed consent process. It discusses the requirements of ethical research, the processes that are in place to ensure the safety of trial participants, elements of the informed consent process, and important questions to ask before joining a study. A number of resources and a glossary are provided for additional information. This training is appropriate for CAB and community members.|
Additional Training, Guidance Documents, and Resources
Additional training courses, guidance documents and other resources are available on the DLP, HANC Portal, AVAC website, and other locations as noted below.
This is an important tool for sites and community members in developing and maintaining effective community advisory boards and other engagement activities. Available in English, Spanish, and Portuguese.
- Recommended Approach to Data Collection: The Two-Step Method, March 2020, modified from recommendation, April 2015
- Guidance on the Use of Gender-Inclusive HIV Research Practices: Protocol Design, Data Collection, and Data Reporting, updated April 2020
- NIAID HIV Language Guide - encourages the use of non-stigmatizing language. Available in English, French, Italian, Polish, Portuguese, Spanish, and Thai.
- Basic Scientific Literacy (BSL) Training Module
- Be the Generation HIV Prevention Research
- American Indian, Alaska Native, and Two-Spirit HIV Prevention Research Module
- Bill of Rights and Responsibilities
- Native American Engagement in HIV Clinical Research (NAEHCR) Project Guidance and Best Practices Document
- Site Close-out and Community Engagement
- TB Resources for Communities and Staff
- Biomedical HIV Prevention for Women (cisgender and transgender women)
- National Women & Girls HIV/AIDS Awareness Day 2020 Infographic
- Women & HIV Cure-Related Research
Links to selected publications are included below:
- Building Partnerships and Stakeholder Relationships for HIV Prevention
- Community Engagement in Research: Frameworks for Education and Peer Review
- Community Engaged Research – A quick-start guide University of California, San Francisco
- Engaging community to support HIV prevention research
- Engaging, recruiting, and retaining black men who have sex with men in research studies: don't underestimate the importance of staffing--lessons learned from HPTN 061, the BROTHERS study
- Module for Community Engagement, World Health Organizations
- Science, theory, and practice of engaged research: Good Participatory Practice and beyond
- Stigma, Implicit Bias, and Long-Lasting Prevention Interventions to End the Domestic HIV/AIDS Epidemic