Dear friends,
Every January, I take a moment to pause and think about the year ahead. What can I do better as a woman, wife, parent, and grandparent. But also, what can I do better as a physician and patient advocate? From the professional perspective, that question came into sharper focus during a medical conference I attended not long ago.
I was sitting next to a colleague between sessions when she quietly shared something that stayed with me. She had recently been offered a treatment for her illness based on the results of a clinical trial. But she was uneasy about it. “Only a small percentage of the people in that study were African American,” she said. “I’m not sure it will work for me.”
When more kinds of people take part in research, doctors can learn how treatments work for everyone across races, ages, and genders. That kind of information makes medicine safer, stronger, and fairer for all of us.
She went on to tell me that she did everything right, but her disease came back. She wondered aloud if it was because people like her weren’t represented. Her question stuck with me. When the people in a study don’t reflect the people who will use the treatment, we leave entire communities out of scientific certainty.
Her concern made me think about how often we hear the term clinical trial without really understanding what it means or why participation matters. Many of us trust the medicines and treatments we’re prescribed, but we rarely stop to ask where the data behind them actually come from.
So, what is a clinical trial? Simply put, it’s a research study that tests how well new medical treatments, drugs, or procedures work in people. Clinical trials help us move from theory to practice. They turn medical ideas into real solutions for patients. They show us not only what works, but also for whom it works best.
A report from Johns Hopkins Medicine showed that about three out of four people in U.S. clinical trials were white. Only about eight percent were Black, even though Black people make up around 13 percent of the population. The Kaiser Family Foundation also found that more than half of clinical trials don’t share any race or ethnicity data at all, which means we often don’t know who was actually represented in the research.
Why does this matter? Because if the people being studied don’t represent the people being treated, the results may not tell the full story. Genetics, environment, diet, and other social factors can all affect how our bodies respond to treatment. If a drug is tested mostly on one group, doctors have less certainty about how it might work for others.
When people find out that a study didn’t include many people like them, it’s normal to have doubts. Some may wonder if the treatment will really work for them. Others may feel uneasy or even mistrustful. That’s understandable. History gives good reasons for those feelings. The Tuskegee Syphilis Study and other examples of unfair treatment left deep scars. Many communities of color still carry that memory and caution today.
Even with that history, clinical trials are still one of the best ways to move medicine forward. Joining a trial can help people get access to new treatments before they’re widely available. It also means more personal attention from a medical team. Most importantly, when more kinds of people take part in research, doctors can learn how treatments work for everyone across races, ages, and genders. That kind of information makes medicine safer, stronger, and fairer for all of us.
If you ever think about joining a clinical trial, here are simple questions to ask:
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How many people of my race, age, or background will this study include? It’s important that research reflects all kinds of people so doctors know what truly works for everyone.
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What steps are taken to keep me safe during the study? You should always understand how you’ll be protected and know that you can stop at any time.
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Is the trial easy for me to get to and fit into my life? Think about travel, time, and other responsibilities before saying yes.
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Who is running the study? Look for a research team that listens, communicates clearly, and respects your community.
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How could my participation help others? Taking part in research can make future treatments safer and more effective for your family and others like you.
That conversation with my colleague highlights what’s at stake. If the science behind our care doesn’t include everyone, then it doesn’t fully serve anyone. So as we begin this new year, let’s make it a priority to speak up, stay curious, and take part in shaping research that represents us all.
Every question we ask and every person who participates moves us one step closer to better, more equitable care for everyone.
With your health in mind,
