Increasing the meaningful involvement of women in HIV cure-related research: a qualitative interview study in the United States
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-d...
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| Format: | Article |
| Language: | English |
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Taylor & Francis Group
2023-12-01
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| Series: | HIV Research & Clinical Practice |
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| Online Access: | http://dx.doi.org/10.1080/25787489.2023.2246717 |
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| author | Karine Dubé Elizabeth Barr Morgan Philbin Amaya Perez-Brumer Brian Minalga Beth Peterson Dawn Averitt Bridgette Picou Krista Martel Cecilia Chung María Mejía Martha Cameron Gail Graham Lynda Dee Dázon Dixon Diallo Ebony Gordon Anastasia Korolkova Typhanye Dyer Judith D. Auerbach Eileen Scully Krista L. Dong Sara Gianella |
| author_facet | Karine Dubé Elizabeth Barr Morgan Philbin Amaya Perez-Brumer Brian Minalga Beth Peterson Dawn Averitt Bridgette Picou Krista Martel Cecilia Chung María Mejía Martha Cameron Gail Graham Lynda Dee Dázon Dixon Diallo Ebony Gordon Anastasia Korolkova Typhanye Dyer Judith D. Auerbach Eileen Scully Krista L. Dong Sara Gianella |
| author_sort | Karine Dubé |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-a0cfa59541f24e93ba154e91b78eb66a |
| institution | Kabale University |
| issn | 2578-7470 |
| language | English |
| publishDate | 2023-12-01 |
| publisher | Taylor & Francis Group |
| record_format | Article |
| series | HIV Research & Clinical Practice |
| spelling | doaj-art-a0cfa59541f24e93ba154e91b78eb66a2025-01-20T14:37:59ZengTaylor & Francis GroupHIV Research & Clinical Practice2578-74702023-12-0124110.1080/25787489.2023.22467172246717Increasing the meaningful involvement of women in HIV cure-related research: a qualitative interview study in the United StatesKarine Dubé0Elizabeth Barr1Morgan Philbin2Amaya Perez-Brumer3Brian Minalga4Beth Peterson5Dawn Averitt6Bridgette Picou7Krista Martel8Cecilia Chung9María Mejía10Martha Cameron11Gail Graham12Lynda Dee13Dázon Dixon Diallo14Ebony Gordon15Anastasia Korolkova16Typhanye Dyer17Judith D. Auerbach18Eileen Scully19Krista L. Dong20Sara Gianella21School of Medicine, Division of Infectious Diseases and Global Public Health (IDGPH), University of California San Diego (UCSD)National Institutes of Health (NIH) Office of Research on Women’s Health (ORWH)Center for Vulnerable Populations, Department of Medicine, University of California San Francisco (UCSF)Dalla Lana School of Public Health, University of TorontoFred Hutchinson Cancer Center, Office of HIV/AIDS Network Coordination (HANC)Wistar Institute and BEAT-HIV Delaney Collaboratory Towards an HIV-1 CureThe Well Project and Women’s Research Initiative on HIV/AIDS (WRI)The Well Project and Women’s Research Initiative on HIV/AIDS (WRI)The Well Project and Women’s Research Initiative on HIV/AIDS (WRI)Transgender Law CenterThe Well Project Community Advisory Board (CAB)International Community of Women Living with HIV (ICW)University of Maryland PATIENTS ProgramAIDS Action BaltimoreSisterLove, IncDelaney AIDS Research Enterprise (DARE) Community Advisory BoardSchool of Medicine, Division of Infectious Diseases and Global Public Health (IDGPH), University of California San Diego (UCSD)School of Public Health, University of MarylandDivision of Prevention Science, Department of Medicine, UCSFJohns Hopkins School of MedicineHarvard Medical SchoolSchool of Medicine, Division of Infectious Diseases and Global Public Health (IDGPH), University of California San Diego (UCSD)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.http://dx.doi.org/10.1080/25787489.2023.2246717womenhivclinical trialsparticipationmeaningful involvementhiv cure research |
| spellingShingle | Karine Dubé Elizabeth Barr Morgan Philbin Amaya Perez-Brumer Brian Minalga Beth Peterson Dawn Averitt Bridgette Picou Krista Martel Cecilia Chung María Mejía Martha Cameron Gail Graham Lynda Dee Dázon Dixon Diallo Ebony Gordon Anastasia Korolkova Typhanye Dyer Judith D. Auerbach Eileen Scully Krista L. Dong Sara Gianella Increasing the meaningful involvement of women in HIV cure-related research: a qualitative interview study in the United States HIV Research & Clinical Practice women hiv clinical trials participation meaningful involvement hiv cure research |
| title | Increasing the meaningful involvement of women in HIV cure-related research: a qualitative interview study in the United States |
| title_full | Increasing the meaningful involvement of women in HIV cure-related research: a qualitative interview study in the United States |
| title_fullStr | Increasing the meaningful involvement of women in HIV cure-related research: a qualitative interview study in the United States |
| title_full_unstemmed | Increasing the meaningful involvement of women in HIV cure-related research: a qualitative interview study in the United States |
| title_short | Increasing the meaningful involvement of women in HIV cure-related research: a qualitative interview study in the United States |
| title_sort | increasing the meaningful involvement of women in hiv cure related research a qualitative interview study in the united states |
| topic | women hiv clinical trials participation meaningful involvement hiv cure research |
| url | http://dx.doi.org/10.1080/25787489.2023.2246717 |
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