Since 2009, the Legacy Project at the Office of HIV/AIDS Network Coordination (HANC) has worked to address issues that influence the participation of underrepresented populations in HIV clinical research. The Legacy Project team consists of Russell Campbell, Brian Minalga, Pedro Goicochea, and Tasia Baldwin. Here are a few highlights of what the Legacy Project is up to in 2022!
The NIH-funded HIV/AIDS clinical trials networks are leading the way to ensure that underrepresented populations are included in their research. Black, Indigenous, and Latinx people. Youth, cisgender women, and transgender people. People who inject drugs and people who undergo pregnancy. Too often, these populations are excluded, neglected, or otherwise underrepresented in HIV research. And too often, researchers explain this underrepresentation by characterizing these populations as “hard-to-reach” and “mistrustful.” The HANC Legacy Project’s Representative Studies Rubric (RSR) uproots this narrative by revealing, through evidence-based methodologies, systemic and institutionalized practices within clinical research that perpetuate the exclusion of underrepresented populations.
Created by the Legacy Project in 2021, the RSR is a tool consisting of a 12-item questionnaire designed to identify the extent to which individual study protocols include and exclude underrepresented populations. Led by Brian Minalga, a group of Legacy Project Working Group members performed an RSR analysis of 100% of studies that were enrolling in the ACTG, HPTN, HVTN/CoVPN, IMPAACT, and MTN in September 2021. This analysis identified gaps in inclusion practices that the Networks are working to address. Data generated by this analysis have been presented to Network leadership, who in turn nominated representatives from their respective Networks to join the HANC-facilitated RSR Working Group, with the goal of implementing the RSR as a protocol development tool to ensure that questions of inclusion and representation are considered as early as possible and throughout the protocol development process. In 2022, the Legacy Project is dedicated to supporting the Networks and all their study teams in implementing the RSR as a protocol development tool. Legacy Project activities to support RSR implementation include:
The NIH-funded HIV/AIDS clinical trials networks exemplify dedication to inclusion and representation in HIV research conducted around the world. The Legacy Project team is proud to support the Networks in achieving their mission to end the HIV epidemic—for all.
H=H is produced by the Legacy Project with the purpose of delivering content on HIV research education, affirming Black, Indigenous, and other People of Color (BIPOC) and sexual gender minority communities disproportionately impacted by HIV. H=H was launched on November 1, 2021, and six episodes have been aired:
PACHA’s Subcommittee on Stigma and Disparities invited the Legacy Project to participate in a meeting that will generate US national recommendations on HIV cluster detection and response (CDR) activities. CDR involves identifying and responding to HIV transmission patterns through a process called molecular HIV surveillance (MHS), in which the genetic relatedness of HIV in many different people is used to monitor different HIV strains. Brian Minalga is the Legacy Project’s resident expert in CDR/MHS ethics and community engagement, having presented at various conferences and published several journal articles on the topic. The ethics of HIV genetic sequencing and related activities are relevant to the NIH-funded HIV/AIDS clinical trials networks, which perform HIV genetic sequencing in some studies (with the consent of participants, as required in all aspects of clinical research). Brian traveled to Atlanta for this meeting, which took place May 9-10.
Having led to the approval of pills, rings, and shots that prevent HIV transmission, biomedical HIV prevention research has never held more promise to end the HIV epidemic. But if we aren’t working to end the HIV epidemic for all, then we’re not really working to end the HIV epidemic. People who are underrepresented in HIV prevention research are also underrepresented among those who benefit from biomedical HIV prevention tools. The Legacy Project’s Be the Generation (BTG) initiative is working to ensure that underrepresented populations have the opportunity to engage in HIV prevention research. Here’s how we’re supporting this generation to be the generation to end the HIV epidemic:
National Latinx Conference on HIV/HCV/SUD, Biomedical HIV Prevention Summit & Upcoming Appearances
Legacy Project conducted the workshop, “Community Involvement in HIV Prevention Clinical Research” at the 2022 National Latinx Conference on HIV/HCV/SUD in Albuquerque, New Mexico with over 60 participants.
The Legacy Project team recently returned from Chicago, IL, where they reached over 300 conference participants with workshops at the Biomedical HIV Prevention Summit:
Russell, Brian, Pedro, and Tasia hope to see you soon! Here are some dates and places where you can catch up with them:
Always: Russell Campbell, firstname.lastname@example.org
Brian Minalga, email@example.com
Pedro Goicochea, firstname.lastname@example.org
Tasia Baldwin, email@example.com
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