CTSA Program Community Mentorship Helps Advance Multiple Sclerosis Research in Latinos

Lilyana Amezcua, M.D., a University of Southern California (USC) assistant professor and clinical neurologist, investigates the complex genetics of multiple sclerosis (MS) among Latinos in greater Los Angeles. Through the NCATS’ Clinical and Translational Science Awards (CTSA) Program-supported Community Mentorship Program at the Southern California Clinical and Translational Science Institute (SC CTSI), she developed new relationships with Latino patients and communities. This work strengthened her translational science skills and gave her a new understanding of her patients’ experiences, perceptions and struggles with MS.

Community engagement is a crucial part of the translational science process, said Cecilia Patino-Sutton, M.D., Ph.D., M.Ed., associate professor of clinical preventive medicine, co-director of the KL2 Program and director of the research career development program at the USC Keck School of Medicine. Under her direction, the medical school has created a program to connect early stage clinical and translational scientists, like Amezcua, with mentors from community-based organizations in Los Angeles who understand the investigators areas of research. USC participants were asked to work with their mentors to identify opportunities for the community to provide feedback to some aspect of the investigators’ research and then present the work to community audiences with expertise in the same topic.

“We want to align clinicians and scientists with community members to help [the investigators] understand and incorporate that community perspective in their work,” Patino-Sutton said.

New Understanding of Community Mentorship Role in Research

At first, Amezcua wondered what she would gain from participating in the mentorship program.

“When I was asked to participate in the SC CTSI community mentorship program, I had this notion I already was engaged,” she said. “I had been a fellow with the National MS Society and had participated in educating the community, though not the Latino MS community.”

Lilyana Amezcua, center, is presented with the Health Professionals Volunteer Hall of Fame award from the National MS Society’s National Board Chair Eli Rubenstein and President and CEO Cynthia Zagieboylo.

Amezcua’s community mentor, Mercy Willard, M.P.H., the director of community engagement and program development at the National MS Society chapter in Los Angeles, helped connect her more closely with the local Latino MS community. Together, they developed and hosted several workshops locally and later on a national level. In addition, they conducted a series of focus groups.

“Input from the focus groups made me realize how little I actually knew about how MS-related disabilities affected this population,” Amezcua said. “I learned I had to better understand the community.”

Amezcua found that because of a lack of research studies about MS in the Latino population, little is known about how social and cultural factors affect the disease’s severity and progression.

“I discovered there are misperceptions about what MS is, including its causes and treatments,” she said. “There also are challenging barriers to care and education.”

The experience helped her grow as a translational scientist.

“While I had been focused on better understanding the genetic influences of MS for many years, prior to the SC CSTI community mentorship program, I had not realized I needed to spend more time with families living with the disease,” Amezcua said, adding, “My research now includes a focus on the perception and behaviors of the Latino community with MS to better understand how they live with disabilities that come with the disease.”

The local workshops helped raise interest at the national level to educate social workers and engage the Latino population.

“So what began as a local community mentorship and engagement program became a national outreach effort,” she said.

Amezcua has since been invited to be part of a national task force to develop access-to-care principles for the entire MS population, with a particular emphasis on diversity and minorities. In addition, she and her colleagues produced an award-winning short film about the Latino experience with MS.

“The film will be used as a rapid intervention tool to better understand perceptions of living with the disease,” she said. “Perhaps it will eventually be used in MS centers across the country.”

Amezcua continues to focus on collecting genetic data from the Latino MS community. She is also working closely with colleagues at the University of Miami, and she recently received grants from the National MS Society and the California Community Foundation to use the film as a tool to understand patient and community perceptions of the disease. The National MS Society grant also supports a multisite study to examine genetic, environmental, social and cultural factors and disease severity.

The SC CSTI program reach has expanded as well: More than a dozen other NCATS-supported CTSA Program hubs in California, Oregon and other states now collaborate to develop initiatives that connect early stage research scholars with community engagement opportunities that help shape the investigators’ research through interactions with community mentors.

Posted May 2017