Expanding voices in medical research: Bringing communities to the center of brain health research

Clinical trials are vital to advancing medicine, yet many people who could benefit from neurological research are not represented in current studies. At UTHealth Houston, Anjail Z. Sharrief, MD, MPH, and her team are working to close this gap by designing neurological research that reaches a wider range of patients. In this Q&A, she shares how.

Q: What led you to focus on including underserved communities in neurological clinical trials?

A: Many individuals who face a higher risk for neurological conditions are not routinely engaged in research. Even though neurological care overall has improved, gaps remain, and too often we only recognize them later.

For example, many patients with stroke are candidates for mechanical thrombectomy, a procedure that removes a clot in the brain. Trials confirmed its benefit in reducing disability, but later follow-up studies revealed differences in outcomes among groups that were not apparent at first—largely because the original studies did not reflect the full range of patients seen in everyday clinical practice.

That has consequences for everyone. When trials don’t reflect the broader patient population, the findings may not capture how treatments work across different circumstances or health backgrounds. That can mean missed risks, limited effectiveness, or delays in improving care. Trials that reach a wider mix of participants help make medical advances safer and more effective for everyone.

Q: What are some barriers that people may face in participating in clinical trials?

A: Many volunteers face financial challenges. If a trial requires them to come into a clinic during work hours, they may not be able to take time off without losing income. Transportation is another obstacle, especially for patients with mobility limitations. Caregivers may not always be able to bring the patient in.

Q: How can clinical trials be redesigned to make it easier for underserved populations to participate?

A: The first and most important step is engaging with community partners. Historically, clinical trials for neurological conditions haven’t fully included the voices of the communities they are trying to reach. By including community input from the very beginning, we can design trials that better reflect the wide range of patients who experience neurological conditions.

Anjail Z. Sharrief, MD, MPH, is expanding who neurological research reaches at UTHealth Houston, working with communities to make clinical trials more inclusive and impactful.

To support this, we are establishing a brain health collaborative with community boards and oversight groups to ensure patient and caregiver voices are represented from start to finish. Our partners include groups such as ProSalud, Gulfton Home Community, the African American Male Wellness Agency, and the Christopher Pichon II Foundation. We have found that when studies are accessible and relevant, communities are eager to participate.

Q: What are some of the specific ways that your team and community partners will try to make clinical trials more accessible?

A: We recruit volunteers directly in the community rather than waiting for them to come to the clinic. Questionnaires can often be completed by phone or video, reducing the need to take time off work. When in-person visits are needed, we can help coordinate transportation through services such as Uber Health so patients and caregivers don’t have to shoulder that burden. Many of these ideas have come directly from patients and community members.

Q: How can philanthropy help advance this work?

A: Philanthropy can play a crucial role in turning these ideas into action. It could support community health educators, translation services, and outreach that ensure information is accessible and engagement is strong. It could also help launch pilot projects to identify barriers to participation
and test innovative solutions that improve access to trials.

Just as importantly, philanthropy could strengthen the local organizations we partner with by providing training, resources, and evaluation tools. These investments would help build lasting capacity so that brain health initiatives can remain sustainable well beyond a single study.

With this kind of support, we can open lifechanging opportunities and ensure that the discoveries guiding tomorrow’s treatments reflect the patients who may benefit from them.