Irving Institute Pilot Awardee Finds New Ways to Approach Community Engagement

We spoke with Hiral Shah, MD, assistant professor of neurology at CUIMC, about her work addressing the health disparities for Parkinson's disease diagnosis and treatment faced by minority communities.

Can you tell us about your research?

I'm the child of Indian immigrants, and my father is a physician. So I've grown up exposed to medicine as well as issues of health equity, traveling to India at a very young age and spending long periods of time there. Throughout my education and training, I always was interested in issues of global health and public health. Following my time as chief resident at Columbia, I spent a year at the World Health Organization in Geneva to acquire some additional skills and experience, initially as an intern and then later as a consultant. From that experience, I developed an increased interest in addressing issues of stigma and discrimination as it relates to accessing care for neurological disorders. I became very interested in the intersection of mental health and neurodegenerative diseases.

I observed in our clinic that the demographics of Washington Heights and Inwood are not reflected by the clinic demographics. It is clear that African Americans face disparities when it comes to care for Parkinson's disease (PD). This disparity we see is also echoed in the literature, including delays in diagnosis by up to a decade. As a group, they are less likely to be referred to rehabilitative services, less likely to do deep brain stimulation and advanced treatment, and less likely to be prescribed the appropriate medication.

When I was looking for opportunities or mechanisms to address some of these health disparities, I came across the Community-Based Participatory Research (CBPR) Scholars and Awards Program. It was really such a wonderful experience. And it's led to the development of an initiative around addressing health disparities as it relates to PD for minorities.

How were the Clinical and Translational Science Awards (CTSA) Program resources helpful to you and your work?

In 2019 I participated in the CBPR training program, which was really transformative. Without it, I would never have acquired the knowledge and skills necessary to do truly collaborative community engagement work.

I also would never have met the community partner who I continue to work with and have built a relationship with. I was introduced to Ms. Anita Parker, LCSW, through the CBPR program, and it was a very fortuitous meeting—she has been an essential partner in this effort. Ms. Norma Husband was another partner we worked with. She was a nurse by training and unfortunately passed away during Covid. I can only hope that she is seeing all the work we're doing now to carry on in her memory

The CBPR program provided training and education of these community-driven principles. Our meetings and activities helped us to formulate our approach. Subsequently, I received financial support from the Collaborative and Multidisciplinary Pilot Research Integrating Special Populations (CaMPR-ISP) Pilot Award from the Irving Institute. It allowed us to pay someone to illustrate the book and let us provide incentives to the community members who contributed their narratives. An important principle I learned while participating in the CBPR program is that you have to acknowledge the community members and partners as equals. Why should I be getting rewarded or compensated for my efforts while these individuals are simply volunteers?

The focus of our project is using a community-based participatory approach for education, engagement, and empowerment. In partnership with St. Luke African Methodist Episcopal Church and Lori Quinn [PT, EdD, professor of movement sciences and kinesiology at Teachers College, Columbia University], we’ve held brain health talks, and we hold yearly health fairs in the community. We've hosted a symposium about the role of faith-based organizations in health promotion. We did a two-day training for care partners of people with PD that was developed in partnership with community members.

One of the final outputs was our book, ”The PD Movers: We Keep Moving—Living and Thriving with Parkinson’s Disease in Our Black and African American Communities.” This educational resource is a compilation of first-person narratives coupled with illustrations and culturally sensitive and approachable educational material to really create heightened awareness of PD in the African American and Black communities.

Where did the idea for the book come from?

In 2020, I participated in the Hispanic Outreach Leadership Conference, which was hosted by the Muhammad Ali Center in Phoenix. They shared the work they've done with community health workers. They had developed a flip book about a fictional family that was experiencing the journey of PD from diagnosis to treatment. These community health workers would go into the homes of family members and show them these cartoons, and on the back of the flip book, there would be helpful notes they could use to educate the family about symptoms of PD. I thought that was a really interesting way to do education and engagement.

In working with Ms. Parker at discussions in the church, at brain health talks, and at the health fairs, something I saw and observed was testimony: It's a part of the culture and fabric of the church where people feel moved to share a story of being confronted by an obstacle and overcoming it. This would happen spontaneously during our brain health sessions, where people would say, “This is what happened to me when I had this encounter with the health care system,” or whatever their experience was. I saw that it was a natural way that people communicated. So we wanted the storybook to kind of be faith informed and used this approach that we felt echoed giving testimony in the church.

I think by using real people and their real stories, we were able to really capture the heterogeneity of the disease and how it affects each person differently and really bring concepts of what PD is to life. Because then it's not coming from a doctor like me saying, “Parkinson's disease has x, y, and z symptoms,” but from a person who's living it. What better expert is there to speak about living with the disease than the person who's living with it?

What has the reaction been?

It's been met with very high levels of engagement and interest. It has snowballed into our work being recognized as a model of community engagement where other organizations, groups, and communities are asking us about best practices and how to best approach this work. And it's also leading to changes for individuals and families living with PD who previously were living in secrecy, not even sharing their diagnosis with their family.

I learned about the stigma connected to the disorder in the community directly from Ms. Parker. I remember very early on in our conversations about how we could address this problem of engagement and care. She would say, “We need to get people to talk about it because right now, they aren't talking about it—they're hiding.” She would notice that even in her church, when members would start to develop symptoms of tremor or their balance was off and they would be walking with a shopping cart, they would almost go into hiding. She would tell me these very personal stories or anecdotes of things she had observed in her community.

We held two focus groups with members of the community that identified as Black or African American who also self-identified as having an interest in PD because they knew someone with the disease in their family or within their community. That was the message that continued to come up, that theme about how people don't want to talk about it. Don't talk about it in the family, don't share with their children. They don't want to be pitied or viewed as a burden.

So it's sparking conversations and it's helping to open doors and begin to address health care disparities in PD. The fact that we don't even know how many African American people are living with the disease today speaks to the lack of community engagement. It shines a spotlight on how efforts to recruit for research and perform epidemiological studies have been so limited and flawed.

Is this a model you can build upon?

Absolutely. I think we've established a blueprint that others could use to reach communities that have unique concerns that need to be highlighted. We even have a vision of creating different series of books, using a “meet the community” series to introduce other communities, like the Hispanic community or the East Asian community or the Indian community. We can use those books to highlight their stories because we see the importance of representation. People share when they feel like their experience and their journey are acknowledged and valued. We want others who might not be engaged in care or feel empowered to have the knowledge and information they need to really get the optimal care they deserve.

And we're hoping to use this approach to make other topics more accessible. For example, we're hoping to do a book about palliative care, which is another area that carries a lot of stigma and misconceptions. There is educational material out there, but in many cases it doesn't really include the patient's voice. And that is so critical for effectively communicating with a community member about difficult topics.

People in other fields and disciplines have asked me about using this approach for areas like multiple sclerosis or psychiatric disorders, other disorders that are perhaps misunderstood or there's negative connotations to having the disorder. A tool like this could be very useful in tackling those challenges.

Do you have any advice for researchers here at Columbia?

It can be very hard to get started. In my case, I knew I wanted to do this type of work for so long, and while there may be so many resources available at Columbia, it can be difficult to identify them and balance one's existing commitments—whether that be training, education, or research—with exploring all of the available options.

That's where talking to others in the field can help identify the tools you might need to achieve your goals. Sometimes you don't even know what tools you need because you don't have that experience. For me, Karen Marder MD, MPH [Director of the Integrating Special Populations Resource (ISP) at the Irving Institute] has always been the one to encourage me or introduce me to individuals or organizations she felt could advance my professional development. I've known her since I was a junior resident and have worked with her through the years, and I'm very indebted to her and her guidance. I think sometimes it even came at points where I didn't understand or internalize how those connections could benefit me, or I didn't feel I was prepared enough to bring something to the table. I think having someone like that in your corner is really important. Someone who can guide you and has that experience to point you in the direction of resources you can take advantage of.

Taking advantage of resources and connections from the CTSA really taught me new ways to approach community engagement. I learned to always include the voice of the patient, care partner, and all relevant stakeholders—community leaders, faith-based leaders—from the outset, rather than once you've developed an idea. Having a plan and asking for the opinion and feedback of the community at the end is not going to work. People will not feel included or empowered to lend their voice in an authentic and meaningful way. I think that if you bring everyone to the table and include their voice in the planning stage all the way through to implementation, the end result will be much more meaningful and impactful to the community.

From a personal perspective, I strongly encourage researchers to pursue their passion. If you have an idea you're passionate about, that's where it has to start. Is there something you keep thinking about, that you can't put aside? What is the problem you keep thinking about that you want to solve? What are the tools you need? What is the end result you'd like to see?

This experience has been transformative for me. I think that up until now, there was something missing. Now I find myself thinking about this project all of the time. It allows me to combine many of my interests and passions. I feel like this is what I'm supposed to be doing.