1. The Community Mentorship Program Mentors that Bridge CTSA Trainees and the Community
Cecilia M. Patino-Sutton, MD MEd PhD
Lilyana Amezcua, MD MS
SC-CTSI and Department of Neurology
Keck School of Medicine
University of Southern California

2. Los Angeles County 10.4 million residents 140 cultures 224 languages
45% Hispanics
We have the unique opportunity to understand health in the context of diversity because we are such a diverse community

3. Our Unique CTSA Context
Emphasis on Community Engagement
Strong Education-CE Relationship
Education Goal: accelerate translation by incorporating a Community Perspective to research while in training program

4. The Community Mentorship Program

5. It works like this…..

6. Multiple Sclerosis and the Hispanic Community
Lilyana Amezcua, MD, MS
University of Southern California
Dept of Neurology,
Division of Multiple Sclerosis and Neuroimmunology
: I want to tell you about how incorporating a community mentor to my team impacted my career as a physician scientist.

7. Research at Start of KL2 program
At the start of KL2 program- my research was focus on investigating the relationship of genetic ancestry in the phenotypic expression of MS in Hispanics.
As a Mentored Research Scholar
Describe the process of going from this model to next by incorporating the community perspective
this is how I used to think about MS. My vision of the role of Hispanic Ethnicity on Early Disability in adults with multiple sclerosis when I started the KL2 Progrm

8. Our new model now incorporates key factors related to Hispanic background that preliminarily show that they have the ability to modify disease severity and will now explored in progression. This concept is part of a recent proposal that was recommend for funding by the NMSS-
New model after including community perspective
Currently under review at MS Society R01 type grant Recommended to funding
Lilyana, how do perceptions fit in the model….? There is no arrow connecting to MS

9. Engaging the MS Community locally & Nationally
The community mentor program help me foster key relationships with local and national leaders. It was while conducting educational programs that I realized that the community affected had its own perspective. Those perspectives in a way were the barriers we were longing to understand. . .
Explain that point when you realized the importance of the community perspective…..
Identification of community needs:Identify barriers to care, understanding of MS
Improve MS well-being in Hispanics with MS
Improve community awareness of disease
Culturally competency -implement and translate research findings
We worked on focus group and reported our findings to major meetings and published papers related to immigrationm perceptions of MS
Mercy Willard, MPH
Director of Community Outreach
NMSS-
SC local chapter
Craig Weisley
Director of Diversity and Inclusion
NMSS- national

10. Community Engagement Program pivot
Local NMSS + PI: Amezcua
MS workshops for Spanish speaking social workers
Programs design to capacitate lay community members to serve as case managers in their care
National NMSS + Amezcua
NMSS mission statement by incorporating key issues related to diversity
Formed the task force to develop ACCESS TO CARE Principles

11. NMSS recognition for our work
The targeted messaging we conducted, followed by focus groups sessions (recently published) eventually led to the recognition in the clinical and research community that issues related to culture need to be accounted for, that the management of MS in this community requires cultural competency and that perceptions of illness need to be further explored
The National Multiple Sclerosis Society presents its Volunteer Hall of Fame:
Health Professionals Award

12. Lourdes Baezconde-Garbanati. PhD
Marisela Robles, MPH-community liaison for Community Engagement at SC CTSI
Lourdes Baezconde-Garbanati. PhD
Department Preventive Medicine, Keck School of Medicine, USC
Our next step was to capture and share those perceptions such as common cultural idioms, like susto -
The tool to display this needed to go beyond me lecturing or writing about it. I needed to effectively be able to tell the story using their own words. . . I turned to experts in edutainment: Baezconde
What else could I do locally or nationally?
How can we reach them without offending them, lecturing and develop trust?
What INTERVENTION can I develop to increase MS awareness and address social and cultural idioms that have the potential to negatively impact MS itself and its care?
Genetically we would still need to address this dievrsity
Susto

13. Multidisciplinary Approach
This required I connect with other disciplines outside of neurology

14. Developing an Intervention to Increase Awareness of MS among Hispanic Population 2015-2016
Film CREW and Director
We formed a larger team – representing diverse backgrounds and fields (nursing, etc)
We wrote the proposal to develop a short-film using patients and metaphor narratives- funded by immigration health initiative at USC, educational grant from Biogen pharmaceuticals and a private patient donation

15. The short film’s concept and key scenes were presented at a major national conference in June 2016 and awarded best platform presentation

16. So now when I see an MS patient I not only think about only the biological aspects of the disease but I think about their community, their support, and their ideology of the disease we care for.
Arc of the presentation: I want to tell you about how incorporating a community mentor to my team impacted my career as a physician scientist. For and example, now when I see a patient with MS this is what I think about …. (just an example)
3 main learning points or curves in my career:
Fostered relationships with the community
Developed both locally and nationally r

17. We have identified potential modifiable factors that have the potential of improving the lives of those affected with MS in the Hispanic populations. Our current goal is to amass as many Hispanics affected with MS, bring them into ARHMS (funding for genetic component – multisite R01), collect environmental and sociocultural factors and study the short film as an intervention across strategic sites in the US to better understand perceptions.
This program has been essential is my growth as a clinician scientist, it has connected me to great individuals fighting for the same cause: to improve health care outcomes in MS

18. https://vimeo.com/181688819 Password: MadeStrong
End with teaser or start with teaser

19. More Stories About the Program…..
Incorporating the community to help:
Tailor text messages in Spanish for a diabetes intervention
Form a research community advisory board that includes Pilipinos that don’t speak English and communicate through a interpreter

20. Disseminating the Program…..

21. Academic Medicine, 2016

22. California CTSA Consortium Project (7 CTSA)

23. Thank You SC CTSI | www.sc-ctsi.org Phone: (323) 442-4032