Prioritizing Visibility Through Community Partnerships
The development and engagement of strategic partnerships is a vital component of representing diverse populations in clinical trials and research.
HANC supports Community Partners, The Legacy Project and the COVID-19 CAB Coalition to achieve representation and build relationships with historically underrepresented communities in clinical research.
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Community Partners (CP) is a cross-network body charged by the Network Leadership and the Division of AIDS (DAIDS) with promoting effective representation of the many communities within which the National Institutes of Health (NIH) HIV/AIDS Clinical Trials Networks conduct research.
The Community Partners group is made up of community representatives from the NIH-funded HIV/AIDS Clinical Trials Networks community groups and network staff, including representatives from the AIDS Clinical Trials Group (ACTG), the HIV Prevention Trials Network (HPTN), the HIV Vaccine Trials Network (HVTN), and the International Maternal Pediatric Adolescent AIDS Clinical Trials Group (IMPAACT). HANC staff and representatives from DAIDS serve as non-voting members.
How does Community Partners work?
Community Partners represents community research needs and priorities to the NIH Clinical Trials Network Leadership (NLG) and Strategic Working Group (SWG) and other advisory groups or committees as needed/requested. CP provides input to DAIDS research plans as they relate to scientific agendas, ethical conduct of clinical trials, community education, community training and communication/information dissemination in a manner that ensures respect for community priorities and continued community participation.
What is Community Partners Doing?
Community Partners focuses on improving intra- and inter-network community input at all levels, identifying and developing programs to meet the training and support requirements of local Community Advisory Boards, increasing the representation and participation of community members from resource-limited settings and vulnerable populations, and identifying and addressing challenges to participation in clinical trials. Community Partners conducts activities regularly through conference calls and online tools such as email and a web portal system that allows for document collaboration and discussion boards.
Community Partners Working Groups
Make decisions on behalf of Community Partners and its general membership in accordance with CP Organizational Guidelines.
Identify opportunities for improvement and work in collaboration with DAIDS to provide guidance to researchers, communities and stakeholders regarding the ethical considerations and challenges in research with individuals facing stigma, discrimination, legal sanctions and/or interpersonal violence, and social harms.
Improve and promote transgender inclusion as outlined in the CP Memorandum, including working with DAIDS, the Networks and other groups to encourage adoption and implementation of the recommendations. Review and make recommendations regarding Standard of Care issues for community members. In partnership with CP Ethics WG, review and address understanding of IC among CABs. Continue to review and make recommendations on co-endorsed protocols to ensure community input.
Develop a strategy to disseminate and promote new or standardized cross-network Community Partners training materials to Networks, Sites, and other community groups. Assess the value of materials and determine additional priority topics. Work to make CP training modules on the DAIDS LMS available in an open access forum.
Share existing CAB training materials, identify and develop new or standardized cross-network CAB training materials when there are unmet training needs or a strong rationale for standardized modules.
The Legacy Project
The Legacy Project works nationally to increase awareness of and build support for HIV prevention and treatment, clinical and behavioral research by addressing factors that influence participation of historically underrepresented communities. The Legacy Project achieves its core mission through ongoing and strategic engagement, collaboration, education, and scientific investigation.
Working Groups and Projects
With a team of diverse, skilled and devoted staff, the Legacy Project works to cultivate and enhance partnerships and relationships among the National Institutes of Health (NIH) HIV/AIDS Clinical Trials Networks and research sites, research and academic institutions, governmental agencies, community-based organizations and affiliates, while ensuring a commitment to capacity building for communities and populations most impacted by the HIV epidemic in the United States.
Be the Generation (BTG) is a project that builds community capacity to end the HIV epidemic through scientific literacy and engagement with biomedical HIV prevention research, focusing on microbicides, PrEP, TasP, and vaccines. Initiated in 2006 by the National Institute of Allergy and Infectious Diseases to create support for HIV vaccine research, BTG is now managed by the Legacy Project to promote the work of the NIH-funded HIV prevention research agenda more broadly. The Legacy Project maintains the commitment to provide the community with accurate information and resources for HIV prevention research in three ways:
- Managing a public website on HIV prevention research and community engagement
- Curating a quarterly newsletter, BTG News (contact BTG to subscribe)
- Conducting trainings:
Please visit Be the Generation for access to these resources and more information.
In 2015, the Division of AIDS at the National Institute of Allergy and Infectious Diseases established a Cross-Network Transgender and Gender Diverse Working Group. The group’s goals are to foster coordination, collaboration, and an exchange of information related to transgender issues across the NIH-funded HIV/AIDS Clinical Trials Networks. While the TGDWG is managed by the Division of AIDS, the Legacy Project plays an instrumental role in the working group and the development of its resources, namely:
The New Investigators Working Group supports cross-network collaboration by promoting the various Network’s Scholars Programs while strategically promoting the involvement of underrepresented investigators. This group provides appropriate guidance and leadership in development, and dissemination of information about the various network new investigator programs and engagement of new investigators, with an emphasis on developing underrepresented minority researchers in the US.
Utilizing an equity-based approach, the NIWG focuses on supporting cross-network collaboration while strategically promoting the involvement of underrepresented researchers.
The Latinx Caucus is comprised of representatives of academia, advocacy organizations and community educators of the HIV/AIDS research networks working together to raise awareness and increase representation and participation of Latinx in social, behavioral and clinical research in the fields of HIV, COVID-19, STI and TB.
We intentionally use the term Latinx as an act of inclusion and solidarity with people of all genders in the Latin American diaspora.
- Featured article: Representation Matters, HIV Specialist, Fall 2022
The American Indian/Alaska Native Working Group aims to increase engagement and participation of AI/AN populations in HIV, STI, tuberculosis and COVID-19 in behavioral, sociological and clinical research, and to support initiatives that contribute to Ending the HIV Epidemic in these populations.
The WHRC is a working group of the Legacy Project comprised of women who are leaders in women’s health and HIV from around the United States. With community and staff members representing the NIH-funded HIV/AIDS clinical trials networks, this group provides culturally appropriate guidance and leadership in development, implementation, and dissemination of information about HIV research focused on and responsive to the needs of cisgender and transgender women and girls in the United States.
The WHRC focuses on advocating for HIV research with women living in the United States but operates with a comprehensive awareness of the potential for American women to benefit from HIV research that is being conducted internationally. To that end, WHRC’s focus is domestic, but its interests are both global and optimistic.
View WHRC Work Plan
Biomedical HIV Prevention for Women Training
Women & HIV Cure-Related Research Training
National Women & Girls HIV/AIDS Awareness Day Infographic
COVID-19 CAB Coalition
The HANC-facilitated COVID-19 CAB Coalition formed in September 2020 to share information, facilitate resource sharing, and advocate on the behalf of the overall COVID-19 research efforts. Current group members represent the COVID-19 Prevention Network (CoVPN) Community Engagement Working Group, ACTG's ACTIV-2 CAB, AVAC's COVID Advocates Advisory Board, the CFAR National CAB Coalition, the COVID-19 CAB at Stony Brook, DAIDS, and Community Partners.
Find resources on how to become a participant in clinical research, community engagement materials, important social media accounts to follow, webinars on COVID-19, and other useful information on our COVID-19 resources page.