At age 21, Morton was diagnosed with multiple sclerosis (MS) and prescribed a prominent medication at the time, interferon beta-1a. The weekly self-administered injection kept her symptoms at bay. But Morton says that, while her doctor and patient information publications provided useful information about managing her condition, those sources didn’t address many of the questions important to her.
For example, as an African American, Morton says she couldn’t find information about MS specific to her community, other than references to actor Richard Pryor, who also had the disease. Also unanswered were practical questions relevant to her age, like how MS affects the body’s processing of alcohol, determining whether she could drink at social events.
“I was trying to understand what it meant to have a new normal with an MS diagnosis while also figuring out normal life in my 20s—having independence, discovering who I was, and understanding what my limitations were,” Morton says.
In the 18 years since her diagnosis, Morton’s outlook and healthcare experience have changed. That’s largely due to her participation in a focus group and Facebook Live events on minority communities in MS research and other related topics—both the creations of Atlanta-based neurologist Mitzi Joi Williams, MD, after her involvement on a project that a Eugene Washington PCORI Engagement Award supported.
“For someone given an MS diagnosis so young and in 2001 when there was little information, my goal was to live a healthy life but always knowing that one day, I would be in a wheelchair,” Morton says. “Now, after watching these Facebook Lives, I feel there is more to hope for and that is possible, and that a wheelchair may never come.”
Identifying Barriers and Opportunities
Williams’ events grew out of her work as a member of the project’s MS Minority Research Engagement Partnership Network. The network brings together project advisors that include people with MS, MS advocacy organizations, minority health associations, and others dedicated to involving more members of minority communities as partners in MS research.
“We wanted to put our heads together to see how we could improve education about or engagement in research for people of ethnic minority groups,” says Williams, who has specialized in MS for a decade.
Williams began focusing on the imbalance in minority community participation in MS research after she and colleagues reviewed the scientific literature in 2014. They found that of the nearly 60,000 published articles on MS research, only 113 focused on African-American patients and only 23 on Hispanic patients – a total of less than 1 percent of the published research.
These findings are just one reason Williams wanted to collaborate on the project.
We wanted to put our heads together to see how we could improve education about or engagement in research for people of ethnic minority groups.
“If you want to dig into the data and ask, ‘Does this drug work as well for African Americans as it does for Caucasians or for another group?’ If you have just a handful of people, it’s really hard to make that determination,” says Hollie Schmidt, MS, project lead and Vice President of Scientific Operations at the Accelerated Cure Project.
Through the network, Schmidt’s PCORI-funded project identified barriers to research participation for minorities and promoted outreach efforts to overcome them, starting with surveying the MS community.
The survey showed African Americans and Hispanics more likely to characterize each risk or issue related to research as a strong concern than Caucasians and non-Hispanics. For example, African Americans were much more likely to have a strong concern about being used or taken advantage of by the research team—not uncommon in the community given the legacy of the Tuskegee experiment.
Both groups responded more positively to the idea of research benefiting people in their racial or ethnic group and to studies including different races and ethnicities. And across races and ethnicities, participants cited their personal doctor or nurse as the most trusted source of research information, then MS organizations and other people with MS.
To capitalize on these findings, the network created and distributed patient postcards about MS and MS research to minority communities. It also developed research engagement toolkits for researchers, clinicians, and advocacy organizations to provide information and best practices for increasing diversity in studies.
A Network in Action
To effectively share information obtained from their work together, network partners used established connections and some creative approaches to spread the word.
Coleen Friedman of the National Multiple Sclerosis Society distributed patient postcards at every society-hosted program and major conference. She also gave them to the society’s healthcare access team, which took them directly to clinicians in the field.
“The project really aligned with the society’s efforts to better understand how MS affects ethnicities because there is not a lot known, and there are some significant misunderstandings,” says Friedman, the society’s Director of Targeted Healthcare Provider Engagement. “It’s not widely known that it’s a disease in these communities and that it’s a different disease.”
The society is also using the toolkits that the network produced, distributing the clinician toolkits directly to the thousands of healthcare providers the society’s connected with and promoting the researcher toolkits on their website. Researchers began to respond, inquiring about ways to recruit more minority participants.
Research isn't a one-size-fits-all experience. PCORI's support and willingness to think outside the box in getting patients to the table for research is so important.
“By virtue of having the PCORI award and working with the Accelerated Cure Project and others, we were able to create these materials. It’s such a plus having something you can hand out that you’re proud of, and it gives you opportunities,” Friedman says.
The network had also hoped to use social media as part of its outreach efforts but found a lack of well-established minority social media channels and influencers with a focus on MS research. So Williams decided to try to fill the void, creating weekly Facebook Live events on topics important to the MS community in general and to ethnic minorities, including participation in research.
“One of my goals is for people to advocate for themselves. I always say that medicine plays a part, but people also play a part, and medicine never takes away the part you have to play in your own health,” Williams says. “We are also not reaching a lot of people with information about how they can be involved in advancing the body of knowledge about MS.”
Williams says many Facebook viewers share the events with friends and family members, pose questions during and after the event, and connect with others who are watching.
A Lasting Impact
Although their initial project has ended, the network is staying together and continuing its efforts.
In addition to Friedman’s distribution of materials through the society’s channels and Williams’ efforts with Facebook Live, partners produced a lay-language report posted on the project’s website and featured on an episode of the RealTalk MS podcast. Network partners have attended and presented at conferences, including Consortium of Multiple Sclerosis Centers, where their poster won an award for patient and family education.
For Morton, now Campus Ministry Director at Cristo Rey Atlanta Jesuit High School in Atlanta, Georgia, one of the project’s legacies is how its outreach efforts will continue changing the concept of research for her and others in the MS community.
“Research isn’t a one-size-fits-all experience. PCORI’s support and willingness to think outside the box in getting patients to the table for research is so important,” Morton says. “I think for minority communities breaking down the walls and the intimidation factor really helps. Building trust and a community with Facebook Live opens the door to having more conversations.”
Posted: April 1, 2019