Research Participation Leads to Better Outcomes for All
Increasingly, research shows that the best way to tackle a range of challenging diseases varies from person to person. For example, researchers are working toward precision medicine treatments for a range of conditions, from cancer to Parkinson’s disease — and we also know that some treatments work better in certain groups of people than in others.
Unfortunately, there’s one major barrier to expanding access to these life-changing treatments: A lack of diversity of clinical trial participation.
At first glance, you could conclude that the problem of minority participation in clinical trials has been solved. For all NIH clinical trials combined, the participant population generally matches the makeup of the U.S. But zeroing in on individual conditions tells a different story – one that leads to worse health outcomes for communities of color.
That’s why research professionals and patient advocates are working to improve representation and drive better treatments for all patients. From identifying barriers to participation to creating programs to better connect with participants, clinical research is moving toward a more inclusive – and more effective – approach to trials.
Over the next few weeks, we’ll be driving engagement around this issue by amplifying the voices of those most affected and those who are working hardest to ensure that research populations mirror those of the real world. We've developed a whitepaper diving deep into this topic, and will also be sharing a round-up of opinions on the matter from top advocates, posting several videos from both patients and experts, and engaging with key influencers on social media. And, we’ll also be sharing content about this topic on an ongoing basis, so look for updates in the months to come.
Blog Post: Why Study Populations Need to Match Real-World Ones
If you drill down into the statistics to examine the patients that are taking part, you notice a trend: the population that participates in clinical trials is not representative of the general population. In other words, those who participate in clinical trials are overwhelmingly white; people of color are underrepresented in this research.
Why is this important? As Shanelle Gabriel, an African American living with lupus, points out, “One of the [lupus] drugs that was worked on doesn’t work as effectively in African Americans...I wonder why. But then, are we on the clinical trials to test these things?”
Video: Lupus Patient and Clinical Trial Volunteer on the Frontlines for Diversity in Research
Shanelle Gabriel lives with lupus, but doesn’t let it stop her from sharing her incredible singing voice, maintaining a fit lifestyle, and advocating for minority health.
Shanelle has taken part in clinical trials and views sharing her experience as an important part of driving medical research forward.
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Blog Post: Patient Advocates Weigh In on Minority Participation in Lupus Trials
With a renewed focus on finding new lupus treatments, it is more important than ever to engage people of all backgrounds in clinical trials. While we have made some improvements in this area in recent years, there remains much work to be done. We asked a few of our patient advocate partners to weigh in on why women of color should consider participating in lupus research and what researchers can do to make it easier to engage in studies.
