Additional authors include Pedro Goicochea and Tasia Baldwin.
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 since 2009. The Legacy Project is led by Russell Campbell and managed by Brian Minalga, Pedro Goicochea and Tasia Baldwin. These are a few highlights of what the Legacy Project has been working on since the last update!
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 become pregnant. 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” or “mistrustful,” or don’t say anything about them at all. The HANC Legacy Project’s Representative Studies Rubric (RSR) uproots this narrative by using evidence-based methodologies to reveal 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 now working to address. Data generated by this analysis have been presented to each Network’s leadership, who in turn have nominated representatives from their Network to join the HANC-facilitated RSR Working Group, with the goal of implementing the RSR as a protocol development tool, ensuring that questions of inclusion and representation are considered as early as possible and throughout the protocol development process. This includes the recommendation that protocols specify the reason(s) for exclusion of any underrepresented population(s). 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.
Podcast: H=H, the H is for Human
H=H, the podcast that centers on the human in HIV, is produced by the Legacy Project and presents content on HIV research education, affirming Black, Indigenous, and other People of Color (BIPOC) and sexual gender minority communities disproportionately impacted by HIV. Launched on November 1, 2021, the podcast has aired nine episodes:
Having led to the approval of pills, rings, and shots that prevent HIV acquisition, 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:
2022 HRSA Region 10 Health Equity Conference, Tacoma, Washington:
The Legacy Project participated in the first HRSA Region 10 Health Equity Conference at the University of Washington – Tacoma and virtually on Zoom Events. We presented information focused on addressing why people who inject drugs or people who use drugs are not assessed and/or are excluded from participation in HIV/AIDS clinical research.
US Conference on HIV/AIDS, October 7-11, 2022, San Juan, Puerto Rico:
The Legacy Project team went to San Juan, Puerto Rico, where they presented two workshops and one institute, reaching over 225 participants through the following sessions:
HVTN Conference, October 17-19, 2022, Seattle, Washington:
Legacy Project representatives presented the session “Creating a Legacy of Health Equity by Engaging BIPOC Populations into HIV Clinical Trials” at the HVTN Conference in Seattle.
Gender and Health: Impacts of Structural Sexism, Gender Norms, Relational Power Dynamics, and Gender Inequities:
The Legacy Project presented “The Representative Studies Rubric: 12 Steps to Enhance the Representation of Women and Other Underrepresented Populations in HIV Research” at the NIH Office of Research on Women’s Health Symposium on Gender and Health.
In other news, Russell Campbell was promoted to Director of the Office of HIV/AIDS Network Coordination (HANC) effective October 10, 2022. Russell joined HANC in 2008, and for the past seven years has served as HANC Deputy Director, providing oversight and strategic direction for all cross-network coordination activities.
“Representation Matters” is a recent article authored by Pedro and Tasia on behalf of the Latinx Caucus, published in the Fall issue of the HIV Specialist magazine, a quarterly publication of the American Academy of HIV Medicine. The magazine has 14,000 subscribers and was presented at the US Conference on HIV/AIDS 2022.
Russell, Brian, Pedro, and Tasia hope to see you soon!
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