Minority Engagement in MS Research
Engaging all types of people for research isn’t just a nice thought. It is critical to obtaining research results that will be meaningful. Middle-aged white women are often the people who volunteer for studies. Men, young people, and most significantly, people of color, lack representation in studies.
According to the U.S. Food and Drug Administration, “Overall, few people actually sign up for and participate in trials, and those who do participate don’t always represent the U.S. population. Participation is especially low for certain populations, including adults age 75 or older and people from certain racial and ethnic groups.”
MS Minority Research Engagement Network
According to Hollie Schmidt, vice president of scientific operations at the Accelerated Cure Project (ACP) for multiple sclerosis, the project has received an engagement award from the Patient-Centered Outcomes Research Institute to address the issue of underrepresentation of minority groups in MS research.
“With this funding, we formed the MS Minority Research Engagement Partnership Network with a number of other individuals and organizations including Anita Williams and Shawn Feliciano, who are the group’s MS advisors,” Schmidt said.
Williams and Feliciano also participate in iConquerMS, a patient-led research network for which I am a lead patient representative.
The network conducted a survey of people with MS last summer, and have produced a report about the results titled, “MS Minority Research Engagement Partnership Network: Opinions and Experiences About Research.”
Diversity in trials and studies
This study was a priority, according to Williams, because “as we learn more about multiple sclerosis, it has become apparent that People of Color (POC) are affected at higher rates than previously believed. This fact means it is imperative for the research community to make diversity a priority when populating research and clinical trials.”
Schmidt added, “At Accelerated Cure Project, we have seen an imbalance in enrollment into iConquerMS. Although we don’t know the exact proportion of racial and ethnic groups in MS, it seems clear that we’ve had more success recruiting non-Hispanic Caucasians than other groups. This is a problem because it means our research results won’t apply to everyone equally, and therefore won’t benefit everyone equally. This is also a problem for clinical trials and any type of study that could lead to new breakthroughs for people with MS. We won’t know how well those breakthroughs can benefit different groups of people with MS if the studies don’t include those groups.”
Including minority populations
The study found that “minority populations are just as interested in, and supportive of, participating in research and clinical trial opportunities,” Williams said. “It is imperative that the research community make the effort to include overlooked people. Hopefully, we can find support, and funding, to continue this essential work.”
I asked what the study showed that could help to improve minority research engagement. “We learned about a number of factors that people across the board like — and dislike — about research,” Schmidt said. “For example, most people are attracted to research that they feel will benefit people with MS, and most people dislike study information that’s confusing or not written in a language they speak.”
Schmidt said they also learned that minority group members “are particularly interested in research that benefits their racial or ethnic group,” and they are “more concerned about the chance that researchers might take advantage of them.”
Schmidt added that researchers looking for diversity when recruiting for studies “can take these findings into account when designing their studies and communications materials. They might emphasize how the participants’ rights are protected, for instance, or how the findings will benefit people belonging to racial and ethnic minority groups.”
The lay summary of MS Minority Research Engagement is available online to view. I hope you will view the presentation and reflect on the ways you engage with research.
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