Prioritizing Visibility Through Community Partnerships
HIV research matters for everyone. Strategic partnerships are vital to ensure that everyone is appropriately represented in clinical trials.
HANC manages Community Partners and The Legacy Project to achieve better representation and build relationships with everyone in the general public, especially communities disproportionately affected by HIV.
On this Page:
- American Indian & Alaska Native Working Group
- Be the Generation
- Destigmatizing Substance Use Working Group
- Latinx Caucus
- Legacy Project Working Group
- Minority-Serving Institutions Working Group
- New Investigators Working Group
- Women's HIV Research Collaborative
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 Advancing Clinical Therapeutics Globally (ACTG) Network, 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 to improve engagement in HIV research in the US because research matters for everyone. To achieve this core mission, the Legacy Project builds trust and facilitates collaboration between HIV research institutions and the public, especially the communities most affected, to increase awareness of and support for HIV research.
Working Groups and Projects
A team of diverse, skilled, and devoted Legacy Project staff facilitate a variety of working groups and projects that enhance collaboration between the National Institutes of Health (NIH) HIV/AIDS clinical trials networks, research sites, research and academic institutions, governmental agencies, community-based organizations, and communities themselves with the aim of building the capacity necessary for meaningful engagement in HIV research.
The AIANWG aims to increase the engagement of indigenous populations in clinical trials for HIV and other infectious diseases and creates free educational resources to support this aim.
BTG is a call to action: Be the Generation to end the HIV epidemic. We build community capacity to end the HIV epidemic through scientific literacy and engagement with HIV prevention research, focusing on research conducted by the NIH-supported HIV/AIDS clinical trials networks. More specifically, BTG consists of:
- A public website on HIV prevention research and community engagement
- A quarterly newsletter, BTG News (contact BTG to subscribe)
- Trainings including the HIV Prevention Research (HPR) module and Basic Scientific Literacy (BSL) module
Visit Be the Generation for access to these resources and more information
The DSUWG aims to address the representation of people who use drugs, including people who inject drugs, in HIV clinical trials. This work focuses especially on addressing barriers in the HIV research enterprise that affect the participation of people who use drugs.
The Latinx Caucus is comprised of HIV research staff and community stakeholders, working together to increase representation and engagement of Latinx communities in HIV research.
Minority-Serving Institutions (MSIs) are institutions of higher education designated by the US federal government. These include:
- Historically Black Colleges and Universities (HBCUs)
- Hispanic-Serving Institutions (HSIs)
- Tribal Colleges and Universities (TCUs)
- Asian American and Pacific Islander Serving Institutions (AAPISIs)
The MSIWG leverages MSIs as sites of positive change and impact in the US HIV epidemic. This work focuses especially on increasing access to HIV resources on MSI campuses, enhancing opportunities for engagement in clinical trials, and cultivating careers in HIV research among students at MSIs.
View the MSIWG Work Plan
The NIWG promotes the Scholars Programs of the NIH-funded HIV clinical trials networks which support early-career investigators (ECIs). The group, made up of HANC and Scholars Program staff, develops resources to support the ECIs in their careers while also supporting and harmonizing the networks’ programs.
Visit our page for investigators to learn more about the Scholars Programs and view resources for ECIs
View the NIWG Work Plan
The WHRC is comprised of women who are leaders in women’s health and HIV. With membership including HIV research staff and community stakeholders, this group provides guidance and leadership in the 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 the understanding that women worldwide benefit from all women-centered research conducted across the globe.