Empowering Clinical Trial Participation: Brooklyn Olumba’s Journey and Insights on Access, Advocacy, and Representation
Author: Katherine Cornish
Brooklyn Olumba, wants to make sure everyone knows that being a clinical trial participant isn’t just something to do in order to better the future of medicine, it’s got perks. Brooklyn started participating in a clinical trial while she was going through radiation therapy. The RadComp trial is a study that compares proton therapy versus photon therapy, following cancer survivors for a period of years to look at recurrence rates. Her radiation oncologist approached her about the trial, suggesting she meet with one of the study coordinators after a routine visit. “I met with the study coordinator and they had a handful of papers,” she says, “but she did a really good job of breaking down the study, what it was about, what my participation would look like, talking about informed consent. She made sure I understood everything and had all of my questions answered prior to me saying yes to the study.” Brooklyn highlights how helpful it was to have a study team point of contact available to answer questions at any time. “The study coordinators were linked within my patient portal, so if I had questions I could log on and contact them or my doctor and someone would always get back to me within one or two days,” she shares. Having a responsive, available study team member to answer questions can be a major factor in easing some of the unknown factors or concerns with participation for a lot of individuals. “If I ever felt like I couldn’t reach people or my questions weren’t getting answered, I probably would have dropped out of the study,” she mentions, “Having people readily available for questions had a huge impact on my experience.”
Having that extra resource available has been helpful throughout the study for Brooklyn. Although she hasn’t had to add any additional clinical visits – which she notes has been nice to not have more travel added to her plate – she does have in-depth follow-up surveys that need to be completed quickly. Brooklyn highlights that the handwritten aspect of the surveys and the narrow timeline with which they need to be returned can be challenging with a busy lifestyle. “They were these 20 to 25 page packets. Long, extensive surveys, and it seemed like every time I got it, they really wanted it back ASAP. It’s like having to take a test with the bubbles, and everything has different scales and you’ve got to make sure you’re interpreting each one correctly,” she shares. There’s room for improvement in both the process and the questions, she notes. “If it was electronic, that probably would have been a lot easier. And some of the survey questions were sensitive topics or things that can be sort of triggering when filling them out. “It’s like ‘How often do you think about recurrence?’… Well, I wasn’t earlier but I’m definitely thinking about it now,” she says.
“Why take medicine that hasn’t been studied in someone like you?”
When asked about the most rewarding aspect of participating in a clinical trial, Brooklyn looks at the big picture. “Knowing that I’m contributing to something larger than me is important,” she highlights. “I’m so grateful for all of the people that were in clinical trials for things that have ended up being on my treatment plan. All of the drugs that have been used for my specific type of breast cancer have gone through clinical trials to get approved, so this feels like my way of paying it forward,” she says. Being able to contribute to a bigger, better, and more equitable healthcare universe where treatments are better designed for all bodies has been a key theme coming from a lot of Tigerlily’s ANGEL Advocate team. It’s a powerful benefit to clinical trial participation. “Somebody else was in a clinical trial that led to the approval of a drug that I was able to use to help me get rid of my cancer. If there’s a way for me to give back and be in a clinical trial myself, especially being a young black woman who historically hasn’t been represented well in clinical trials, well it feels like it’s my duty,” Brooklyn says.
As an active advocate, Brooklyn wants to get more involved with community engagement and has been learning where and how communities can affect change in the clinical trial process. “I think that people who are researchers and providers in these studies should engage the community early and not just reach out and say ‘Hey, can you give me your thoughts on this thing that we’ve already created months ago’? People need to get involved early. They need to ask communities what matters most in order for the research teams to be able to remedy any gaps or help offset the burdens,” she suggests. “The way that you improve participation rates is by making sure their voices are heard,” notes Brooklyn. “Make sure the information you’re taking and the things you’re requiring from them have value for the study.”
When asked about what she wants to share with her community, Brooklyn highlights the necessity of clinical research, especially participation of under-represented individuals. “Why would you want to take a medicine that hasn’t been studied in someone that looks like you?” she asks. “We can’t continue to reduce mortality rates or improve the inequities that we see unless we’re seeing diverse people of different ages, races, and backgrounds participating in clinical trials,” she continues. “Clinical trials aren’t a thing where someone just conjured up a drug and you’re the first person to get it. You’re not going to get subpar care. There’s an entire IRB (Institutional Review Board) there designed to protect you, the coordinators and providers are looking out for you.” Brooklyn encourages others to advocate for themselves when it comes to clinical research participation and ask their providers if there is a trial that might be right for them. And about those perks? “Some trials pay for your appointments, you’re getting extra touch points with the care team, you might get travel stipends to cover the cost of getting to your visits, additional scans and imaging that might not have been covered by your insurance but is covered by your trial, and some offer assistance with childcare to help people come in to their appointments,” Brooklyn lists off. “We’ve just got to keep talking about it and getting this information out there,” she says.
Like Brooklyn, the Tigerlily Team encourages all of our readers to look up information and reach out to their providers to ask about clinical trial participation opportunities. For more information on the trial that Brooklyn participated in, you can check out its website here or look up sites near you here.
