Ever Wonder What it's Like to Participate in a Research Study?

By HPTN Communications

 

We sat down with JT Williams, a participant in HPTN 083 and research engagement coordinator, to learn more about his experience as a study volunteer.

 

 

Q: What made you want to participate in a research study?

A: I volunteered because I wanted to give back to the community. Historically, Black people have been apprehensive regarding research studies, and I wanted to be part of changing that narrative. I was working and living in the community; I wanted to create a trifecta effect for people to observe. When I test or educate people, I can share my experience.
JT Williams 3
Q: What was the most challenging part? The easiest part?
A: The most challenging part was getting used to the injections and sharing my medical history. It’s odd, especially since I ask people those questions for a living. It always felt different when I was navigating the space for myself. It made me feel vulnerable, but then it got easier. I had a healthcare team that helped me view my health as an investment for research and myself. For the team to come back and ask me follow-up questions about topics we discussed in prior visits made me feel like I was not just heard but also seen and valued.

 

Q: How did the research team support you throughout the process?
A: The team was very engaged throughout the study. The study coordinators encouraged me to follow up with other individuals to help recruit and educate others. They even invited me to some of their in-person events. I then became one of the ambassadors for the study. I didn't mind sharing my experiences with different people. I had their attention and wanted to make a lasting impact. This opportunity helped me realize the value my experiences and life brought to their study. I felt proud, knowledgeable, and empowered.

 

Q: What advice would you give someone interested in volunteering for HIV prevention research?
A: Do your homework. Look up credible resources. Talk with the investigators. Talk with your doctor or healthcare providers about the opportunity. Get to know what the objectives are and get to understand the people around the cause.

 

Q: How did participating in the study shape your perspective on the effort to end the HIV epidemic?
A: It helped me to understand that my life is an experience worth sharing. I have the tools and resources to empower myself and change the world. My transparency in doing studies has motivated other clients and community members to try research studies. I love that we are changing the narrative of research studies. We have respect and acknowledgment of the past, but we are trailblazing a new narrative of hope, health, and representation. All it takes is one person to be the spark that will ignite change.

 

Q: What was your biggest takeaway from participating in HIV prevention research?
A: I loved the opportunity to be part of something that outlives me. I am part of history and have always encouraged my kids and clients to do something that will impact the world. Even if no one knows your name, do it to improve the world.

 

 

JT Williams
JT Williams works to engage LGBTQ+ individuals to increase visibility, representation, and additional resources for healthier outcomes in current and future generations.