A Community-Led, Person-Centered Approach: Rose Pollard Kaptchuk

Can you briefly describe your research project?

I’m working with transgender and gender diverse communities in India to improve healthcare and improve access to HIV services. There is a huge diversity of transgender identities and communities across India, and they continue to experience negative interactions and mistreatment from health providers. A person-centered care model which goes beyond HIV and creates a safe place to receive care offers a way forward. My research produces community-driven findings which can guide the integration of HIV testing and follow-up services with person-centered care to advance health equity. The study involves analyzing survey data to assess psychosocial correlates with HIV testing among transgender individuals in India, interviews with transgender individuals to understand healthcare needs and priorities, and participatory workshops with service providers in India to generate practical strategies to improve service engagement and clinic approaches.

What inspired you to pursue this topic?

Since 2019, I’ve been working to improve HIV services in India with a USAID project awarded to Hopkins, in partnership with an NGO in India called YRG CARE. Through this work, I learned how hard it is for transgender individuals in India to access healthcare at all, let alone respectful care which meets their needs. I am inspired to address this gap from the basis of human rights, as all individuals deserve respect and access to healthcare. I see the need for healthcare systems to step up and ensure these rights for transgender communities. This topic is also a big opportunity to make gains in public health, specifically in tackling the HIV epidemic and learning how to integrate HIV with other wrap-around services in ways that meet the needs of service users.

How does your project aim to address critical issues currently facing India, and what impact do you hope it will have?

I hope findings can guide the future of transgender and gender diverse healthcare services incorporating HIV prevention and cross-sector collaboration. Partnering with communities as research partners will deepen understanding of barriers to HIV testing for TGD individuals and produce tangible ways that a person-centered care model can overcome these barriers. I think policy suggestions stemming from this study can inform improvement and scale-up of this model not only in India, but also in other settings globally.

Your work involves collaboration with Indian institutions and communities—what partnerships have been most important so far, and how are they shaping your approach?

Community partnership is essential. From the interviews in this project as well as my experiences in India, it is apparent that having a community-led healthcare model inspires immense pride among clients. An affirming, transgender-first clinic is clearly in stark contrast to the quality of care many transgender individuals are used to receiving. Listening to communities and creating spaces where they want to go makes a big difference in healthcare access. Also, the implementation approach of the USAID program and YRG CARE has always involved close collaboration with India’s Ministry of Health, which is essential for the work to have an impact over time and across the broader public health system.

How has the support from the Sunil Kumar and Sumati Murli Research Award made a difference in your research progress or methodology?

With immense grant cuts and slashing of transgender research at the NIH, the  Sunil Kumar and Sumati Murli Research Award is making it possible for me to continue this work and complete the last phase of my project, which are the workshops with staff. It also gives me the opportunity to bring learnings back to community members and advocate for improvements based on findings.

What has surprised you most so far in your research journey? Perhaps early findings, community engagement, or institutional insights?

With the US government cuts of USAID and NIH funding, I was surprised by how quickly services were dismantled and trust from communities and government stakeholders was lost. It emphasized the importance of making the most out of programs while they are happening to optimize services and learn the most we can about them, so that whenever the next phase happens, we can build off past experiences. My research journey has also shown me how important iterative discussions are while collecting data—I have learned that the analysis phase does not just happen at the end, but in fact is ongoing. I have been surprised how vital debrief discussions are to improve the data quality as it is collected, and how it helps to clarify research questions and enhance learnings.

How do you see your project contributing to broader conversations about equity, governance, or health systems in India or globally?

In the HIV field, there has been discussion for a while about the need to integrate HIV with other services, especially sexual and reproductive health more broadly. I hope this project can progress learnings about how to do this integration and how to do this well, specifically for transgender populations. It can contribute to conversations about how public health systems can expand transgender health services which people want and use.

What advice would you give other PhD students interested in international research collaborations, particularly in India?

Focus on teamwork! I suggest finding others already working in India on the topic or area you are interested in and making connections. Build on their expertise and offer yours, as I have learned that you will be stronger working together. Always ask communities in India how, if at all, your involvement can contribute to local project goals and how best you can contribute. Think about how you can connect collaborators in India with resources at your home institution to offer cross-learning. Also, get used to the big time difference and how you will adjust your work schedule to regularly talk with folks in India.

What’s next for your research—and how do you hope to stay engaged with Indian partners after this project ends?

I hope to keep working with folks in India after this project to build on progress with transgender healthcare and HIV service improvement! Now with limited funding opportunities from the US, it more important than ever to stay committed and advocate for this work.