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[This corrects the article DOI: 10.2196/56293.].
ABSTRACT
BACKGROUND: Most new HIV diagnoses among cisgender women in the United States occur in the South. HIV pre-exposure prophylaxis (PrEP), a cornerstone of the federal Ending the HIV Epidemic (EHE) initiative, remains underused by cisgender women who may benefit. Awareness and access to PrEP remain low among cisgender women. Moreover, improving PrEP reach among cisgender women requires effectively engaging communities in the development of appropriate and acceptable patient-centered PrEP care approaches to support uptake. In a community-clinic-academic collaboration, this protocol applies an evidence-based community organizing approach (COA) to increase PrEP awareness and reach among cisgender women in Atlanta. OBJECTIVE: The aim of this study is to use and evaluate a COA for engaging community members across 4 Atlanta counties with high-priority EHE designation, to increase PrEP awareness, interest, and connection to PrEP care among cisgender women. METHODS: The COA, consisting of 6 stages, will systematically develop the skills of community members to become leaders and advocates for HIV prevention inclusive of PrEP for cisgender women in their communities. We will use the evidence-based COA to develop and implement a PrEP-specific action plan to create broader community change by raising awareness and interest in PrEP, reducing stigma associated with HIV or PrEP, and connecting women to sexual health clinics providing PrEP services. In the first 4 stages, to prepare for and develop action plans, we will gather data from one-on-one interviews with up to 100 individuals across Atlanta to capture attitudes, motivations, and influences related to women's sexual health with a focus on HIV prevention and PrEP. Informed by the community interviews, we will revise a sexual health curriculum inclusive of PrEP and community-centered engagement. We will then recruit and train community action team members to develop action plans to implement the curriculum during community-located events. In the last 2 stages, we will implement and evaluate COA's effect on PrEP awareness, interest, HIV or PrEP stigma, and connection to PrEP care among cisgender women community members. RESULTS: This project was funded by the National Institutes of Health and approved by the Emory University institutional review board in July 2021. Data collection began in December 2021 and is ongoing. COA stage 1 of the study is complete with 70 participants enrolled. Community events commenced in November 2023, and data collection will be completed by November 2025. Stage 1 qualitative data analysis is complete with results to be published in 2024. Full study results are anticipated to be reported in 2026. CONCLUSIONS: Through a community-clinic-academic collaboration, this protocol proposes to mount a coordinated approach across diverse Atlanta counties to strengthen HIV prevention for cisgender women and to create a sustainable systems approach to move new sexual health innovations more quickly to cisgender women. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56293.
ABSTRACT
BACKGROUND: Cisgender women represent over half of people living with HIV globally. However, current research efforts toward a cure for HIV focus predominantly on cisgender men. The under-representation of women in HIV cure clinical studies is particularly problematic given data suggesting that sex-dependent phenotypes limit scientific discovery. OBJECTIVE: We aimed to generate considerations to increase the meaningful involvement of women in HIV cure-related research. MATERIALS AND METHODS: We conducted in-depth interviews with biomedical researchers and community members to better understand factors that could increase the meaningful involvement of women in HIV cure clinical trials. Participants were affiliated with academia, industry, community advisory boards, and community-based organizations, and were identified using listings from the AIDS Clinical Trials Group and the Martin Delaney Collaboratories. We used conventional content analysis to analyze the qualitative data. RESULTS: We recruited 27 participants, of whom 11 were biomedical researchers and 16 were community members. Participants included 25 cisgender women, 1 transgender woman, and 1 cisgender man. Key considerations emerged, including the need to ensure that HIV cure studies reflect HIV epidemiologic trends and having accurate representation by sex and gender in HIV cure research. To increase the meaningful involvement of women, recommendations included instituting intentional enrollment goals, frequent and mandatory reporting on enrollment, and incentives for sites to enroll women. Additional themes included the need for agency and self-determination, attention to lived experiences, trauma and healing, and adequate support for women (e.g. logistical, psychosocial, mental, emotional, and physical). Participants noted that women would be willing to participate in HIV cure trials, related procedures (e.g. biopsies), and analytical treatment interruptions. They also expressed a desired for women-centered and holistic clinical trial designs that account for intersectionality. CONCLUSIONS: Our empirical inquiry extends recent calls to action to increase diversity of people involved in HIV cure research. Redressing the under-inclusion of women in HIV cure research is an urgent imperative. The entire field must mobilize and reform to achieve this goal. Meaningfully involving women across the gender spectrum in HIV cure research is needed to ensure that interventions are safe, effective, scalable, and acceptable for all people with HIV.
Subject(s)
Academies and Institutes , HIV Infections , Female , Humans , Male , United States/epidemiology , Qualitative Research , Empirical Research , Biopsy , HIV Infections/drug therapy , HIV Infections/epidemiologyABSTRACT
Introduction: While reproductive injustice indicators are improving globally, they are worsening in the United States particularly for Black and other marginalized communities. Eugenics and obstetric violence against low-income and communities of color create well-founded distrust of sexual and reproductive health (SRH). Transformational, reparative ways of conducting SRH research are needed. Proposed principles of community-led research for reproductive justice: Drawing on our collective experience as reproductive justice leaders, SRH researchers, and clinicians, we propose the following principles of community-led research for reproductive justice: 1) Center the marginalized community members most affected by SRH inequities as leaders of research; 2) Facilitate equitable, collaborative partnership through all phases of SRH research; 3) Honor multiple ways of knowing (experiential, cultural, empirical) for knowledge justice and cross-directional learning across the team; 4) Build on strengths (not deficits) within the community; 5) Implement the tenets of reproductive justice including structural-level analysis and the human rights framework; 6) Prioritize disseminating useful findings to community members first then to other audiences; 7) Take action to address social and reproductive injustices. SisterLove's community-led georgia medication abortion project: We offer the community-led Georgia Medication Abortion (GAMA) Project by reproductive justice organization SisterLove from 2018-2022 as a case study to demonstrate these principles along with the strengths and challenges of reproductive justice research. Discussion: Community-led reproductive justice research offers innovative and transformational methods for truly advancing SRH in an era of increasing policy restrictions and decreasing access to care. Yet existing funding, research administrative, and publishing systems will require structural change.