Community Engagement in NIAID’s HIV/AIDS Clinical Trials Networks

Future Directions for NIAID HIV Research. Consider and CommentSince early in the HIV/AIDS epidemic, the National Institute of Allergy and Infectious Diseases (NIAID) has involved community representatives and advocates in the research process.   The nature and scope of the community’s involvement have grown over the years, but the rationale behind these efforts remains the same:  the people who might benefit from the research should have a voice in the process, and community engagement helps ensure that the research is both relevant and ethical.  While there are many ways to establish community-researcher partnerships, the Community Advisory Board (CAB) model is the primary way in which NIAID and its funded researchers work together with interested, nonscientific community representatives.

NIAID established its first CAB in 1990 in response to HIV/AIDS activists’ demands, and soon thereafter, CABs became a requirement for each of the NIAID-funded HIV/AIDS clinical trials networks and sites.  Currently, there are 138 CABs that interact with one or more of the NIAID-funded clinical trials sites.  The CABs facilitate a two-way dialogue between the research staff and the broader community.  This serves to increase community understanding of why a given trial may be conducted – what researchers hope to learn and how it fits into the overall research plan.  The exchange also helps research staff gain insight into community needs, concerns and culture, which can facilitate more effective and meaningful communication with the broader community, and may enable staff to better assess the importance and feasibility of any given study in that community. In addition to the local CABs, each of NIAID’s six HIV/AIDS clinical trials networks has a CAB with global representation. These CABs interact with the scientific leadership and provide input into the scientific agenda, network operations, and the prioritization and design of specific studies.

When the HIV/AIDS clinical trials networks were restructured in 2006, NIAID established a cross-network group called Community Partners (CP) whose goal is to help ensure effective representation of and timely communication among the global communities where the clinical trials networks operate. This group also works to 1) harmonize best practices for community involvement across the HIV/AIDS networks and affiliated sites, 2) identify the communities’ scientific priorities, and 3) develop effective training tools and evaluation measures.

NIAID has several other means of fostering community engagement. Since 2006, the NIAID HIV Vaccine Research Education Initiative (NHVREI) has worked to increase awareness of and engagement in HIV vaccine research among highly HIV-affected populations within the United States, and more recently has begun to address other prevention research. Through partnerships with local community-based organizations and national and regional non-governmental organizations and associations, NHVREI works to improve knowledge of and attitudes toward HIV vaccine research, enhance partnerships between communities and researchers, and create support for current and future HIV vaccine trials.   Since this project is winding down, NIAID has established a way to ensure that the important work of the NHVREI not only continues but also expands to fully encompass other biomedical prevention research, such as microbicides and pre-exposure prophylaxis.

The Legacy Project, which began within the HIV Vaccine Trials Network, is now a project that spans all six clinical trials networks.  The Legacy Project works to build trust within communities in the United States that have been historically distrustful of and underrepresented in clinical trials research, namely African Americans and Latinos.  Coordinated by the Office of HIV/AIDS Network Coordination, the Legacy Project strives to ensure cultural competency and responsiveness of research by developing partnerships with key stakeholders in these communities.

As the clinical trials networks are restructured in 2013, NIAID will continue to encourage and support community engagement activities through the CABs, CP and the partnerships developed through the Legacy Project and projects like the NHVREI.  NIAID remains committed to increasing the community’s understanding and awareness of HIV/AIDS biomedical research and ensuring that the community always has a seat at the table.


  1. Reuben Hambulo says:

    Community engagement through CABs held remove fear & suspicion of wrong motives by researchers.

  2. Sista Yaa (TACTS) Chicago says:

    Thank you Dr. Carl D. for this timely message and hopefully for the 2013 NIAID restructuring process there will also be more inclusion of local level community-based organizations within Networks as the role for CABS are becoming increasingly demanding.
    The advent of PreP, other biomedical methods and a focus on testing and treatment, advocates are needed to prepare communities for the results from the various current clinical trials. Specifically for HPTN 065 TLC trial, that utilized community organizations to assist in the testing and referral process. With great optimism, one expects these types of community engaging trials will continue in other high prevalent areas.
    At the 2011 United State Conference on AIDS (USCA), for the first time in it’s 15 years existence, will be held in Chicago. The target population is Men that have had Sex with Men (MSM), HIV and treatment advocacy. Highlighted at this conference is advocacy for treatment literacy as a major component for treatment adherence, treatment for prevention (TasP)and national policies, like the National HIV/AIDS Strategy. As stated in Hightow-Weidman & et al., (2011) article on HIV-Positive Men of Color MSM “of those youth who were started on ART, the majority (74%) did achieve undetectable viral loads (<400 copies)”. (Hightow-Weidman, 2011) This study possibly provides some evidence that treatment is an option. And if there is an option for reducing one’s viral load, there is the possibility for reducing the transmission of the virus. This is the kind of evidence that advocates must promote to their communities in order to prepare them future prevention strategies, harm reduction interventions and defeating stigma.
    TACTS (The Association of Clinical Trial Services) a non-profit CBO located in Chicago, is a NHVREI, NMAC and Chicago BTAN partner,(and familiar with the Legacy Project) will be presenting at the 2011 USCA a workshop on Getting More CBOs to Become Involved in Clinical Trials. Between CAB members and CBO’s staff, they can forge more collaborative efforts to increase the level of participation in clinical trial research. These will be the advocates that will play a significant role for community concerns as well as, be liaisons for both the researchers and their constituents!

    Hightow-Weidman,L., Jones, k., Phillips II, G.,Wohl, A.,and Giordano, T. (August 2011).
    The YMSM of Color SPNS Initiative Study Group. AIDS Patient Care and STDs. 25(S1): S9-S14.

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