Dan Keller 0:08 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

As we celebrate Black History Month, we want to take a moment to appreciate and recognize the contributions of Black and African Americans to the Parkinson's disease community. In this second part of our podcast series, we will first hear from Dr. Reversa Joseph, a neurologist and movement disorder specialist at the Columbus, Ohio, Veterans Affairs, and adjunct assistant professor at the Ohio State University. She will discuss the current and historical disparities in research and treatment options among the Black and African American Parkinson's community, and emphasize the importance of understanding the unique experiences of this community to better inform treatment options tailored to their needs.

Later in the episode, Amasi Kuma, Director of Research Partnerships at the Parkinson's Foundation, will speak with Dr. Hiral Shah, a neurologist and movement disorder specialist at the Columbia University Medical Center. Dr. Shah will talk about the inception of the PD Movers book, a collection of narratives from the voices of Black and African Americans living with PD. She will also emphasize the importance of listening to the community to better understand their needs and build a sense of trust, so that they feel comfortable to share during medical appointments.

I started off talking with Dr. Joseph about her thoughts on where we currently stand in terms of research and treatment in the Black and African American Parkinson's disease community. So, Dr. Joseph, in your perspective, where does the Black and African American community currently stand in terms of research and treatment for Parkinson's disease?

Dr. Reversa Joseph 2:39 So, I would say that the Black and African American community still faces significant disparities in research and treatment for Parkinson's disease. While we understand that Parkinson's disease affects people of all races, there are notable differences in how the disease manifests and progresses in patients with Parkinson's disease. I think our understanding in the Black and African American community—in terms of the progression and specific and unique things in relation to patients with Parkinson's disease—is not as well understood due to the underrepresentation of African Americans in clinical trials and research. So I think historically there's a disparity in the lack of diversity in clinical research, and that relates to clinical research with Parkinson's disease as well. There's still underrepresentation of African Americans participating in clinical trials.

Dan Keller 3:38 Besides raising awareness of the value of clinical trials, do you think that there are some underlying reasons that Black and African American patients would be dissuaded from wanting to join a trial?

Dr. Reversa Joseph 3:52 I agree that there is a lack of awareness just about Parkinson's disease in the Black community, which means we need to do a better job of increasing awareness about Parkinson's disease and how it can affect African Americans—not just amongst community members, but also amongst physicians as well, to be thinking of that as a diagnosis when you see a Black person with tremors, that it could not just be old age, but to be thinking of Parkinson's disease in the differential.

But I think also there's historical medical distrust among the Black community. African Americans experienced a longstanding history of discrimination and mistreatment, really within the healthcare system. I know we all know about the Tuskegee syphilis study, where Black men were deliberately left untreated for syphilis without their consent, and so I think that kind of deep-seated mistrust, as well as other violations that have occurred throughout history amongst African Americans, fosters the deep-seated mistrust of medical research and healthcare institutions within Black communities. So not only the historic medical distrust, but there's also some systemic barriers—kind of some structural inequities within our healthcare system, socioeconomic factors, and systemic racism—that also may lead to underrepresentation of African Americans in clinical trials.

Dan Keller 5:19 Can you briefly tell us what the Learning Institute is, and what its intention is?

Dr. Reversa Joseph 5:25 I was very fortunate to be able to participate in a huge collaborative effort amongst the Parkinson's Foundation that reached out to patients with Parkinson's disease, their caregivers, also social workers, movement disorder neurologists, and other staff from the Parkinson's Foundation to work together to create the inaugural Learning Institute that was specific for African American patients and their caregivers. Really, the purpose of the Learning Institute was to train Parkinson's disease patients and their caregivers about research and the clinical trial process. We taught them all about the stages of clinical trials and really provided education about the process, the importance of the process of clinical trials, and the importance of participation and having diverse participation in clinical trials. The goal of that, by equipping these patients and their caregivers with the knowledge, was that they would then go out into the community and be advocates for research in Parkinson's disease, spreading that awareness about the importance of research in the community.

Dan Keller 6:39 Having a more diverse patient population within clinical trials—can that inform clinicians and researchers about the disease in general? I mean, I've heard them say knowing one Parkinson's case is knowing one Parkinson's case. It seems like so many of them have diverse features; is more better to inform about the disease in general for everyone?

Dr. Reversa Joseph 7:02 Absolutely. And I wouldn't say that knowing one Parkinson's disease case is knowing one Parkinson's disease case because, as we understand, Parkinson's disease is a complex neurodegenerative disorder, and it's characterized by a wide range of symptoms. Not every Parkinson's disease patient is the same in terms of their presentation, the symptoms that they may have, as well as their disease progression. It can vary amongst individuals, and research has shown that there may be differences in the presentation and progression of patients with Parkinson's disease.

By including a diverse population in clinical trials and studies, researchers can better understand that full spectrum of Parkinson's disease and the factors that contribute to its variability. Just like diversifying clinical trials, many other health conditions proportionally affect certain demographic groups, racial and ethnic minorities—for instance, diabetes, we see that we have a higher prevalence of this in African American communities—and then studies have shown that African American individuals may be experiencing greater disease disability at the time of diagnosis. So we need to better understand what the cause of that is: Is it just because they're being diagnosed later in the course of the disease, or do they present differently? I think we need to have a better understanding of that through research.

As we move towards this phase of personalized medicine, we understand that it's not a one-size-fits-all, even in terms of the treatment that a patient may take—it differs from one Parkinson's patient to another. So if we're not having significant inclusion of African Americans in these clinical trials, we don't know what could be the right doses for certain patient populations. I think that that's another important aspect of that, as well as if we're doing genetic studies, being able to better identify genetic markers and biomarkers that may predict treatment responses and care interventions. You need diverse patient populations to participate in those clinical trials.

Dan Keller 9:10 What specific challenges still remain that you'd like to see overcome?

Dr. Reversa Joseph 9:16 So, I think we need improved representation in clinical trials, and just raising awareness and encouraging participation in clinical trials is something that we need to do a better job at. We also need to enhance our community engagement and empowerment. We keep talking about increasing awareness about research participation, but also just engaging the community—the Black and African American community—about the importance of research regarding Parkinson's disease, and hopefully fostering these relationships may help to further increase participation. I think that was one of the goals.

Dan Keller 9:57 Amasi, why don't you pick up here and speak with Dr. Shah.

Amasi Kuma 10:02 Thank you, Dan. Dr. Shah, lead us through the captivating journey of the PD Movers book inception. What sparked the idea initially, and how did it evolve into a significant project within the Parkinson's community? Can you elaborate on the collaborative efforts that shaped this collection of diverse African American narratives?

Dr. Hiral Shah 10:26 Sure. Thank you, Amasi, for asking. When I became the medical director of the Parkinson's Foundation Center of Excellence at Columbia University, I saw that our waiting rooms did not reflect the diversity of Washington Heights-Inwood, which is a multicultural community—predominantly Hispanic—that surrounds our academic campus. So I sought to understand the root and solution to this problem, and participated in a community-based participatory research training program, where I met Ms. Anita Parker, a licensed clinical social worker and medical outreach director at St. Luke AME Church, a church based in Harlem. She taught me that the African American and Black community was not ready to participate or engage in educational materials about Parkinson's disease. She told me, "Hiral, we need to start with brain health." So that's where we started.

From 2019 to 2022, we did a series of brain health seminars at the church and brain health fairs. Through these activities, I listened and really learned about the day-to-day challenges that these community members faced when it came to participating in and accessing medical care. I observed testimony that was delivered in the church, which was a natural way where individuals shared their experiences, often overcoming obstacles and achieving great success and empowerment. After I observed these lessons, ultimately Ms. Parker said that we were ready to start talking about Parkinson's disease, but we felt we needed a resource that we could share with community members that they could then take with them to pass on and teach others about what Parkinson's disease was.

As we had listened to these stories of testimony in the church, we decided to develop a book in a storytelling format, where we brought together 10 individuals who identified as African American or Black who were living with Parkinson's disease, along with their care partners. What resulted was the PD Movers book, which is a compilation of first-person narratives accompanied by vibrant illustrations that really share stories. This is what is at the root of our success, because through storytelling we're able to share with the community authentic, real experiences that people can connect to.

They also underscore the importance of representation. For the first time, many people in the African American and Black community are seeing others who look like themselves affected by Parkinson's. In the stories, we're sure to include an emphasis on faith and family, and how this is such a key and important factor in how communities connect to one another and how they overcome obstacles, such as a challenge like living with Parkinson's disease. Weaved in between the stories is educational information explaining what Parkinson's is, addressing some myths and misconceptions in the community, as well as outlining what a multidisciplinary, holistic treatment approach looks like.

I think the second part of your question was about what the impact has been on community members. For the first time, we're getting requests each week from community organizations, churches, and researchers who are benefiting from seeing the lived experience of people with Parkinson's. It's opened people's eyes to what it looks and feels like to live with Parkinson's for a member of a community of color, and for researchers, it's serving as a tool to open doors and start conversations. I've heard so many powerful stories of how people have used the book to start that first conversation with their family member or to make them feel more comfortable with being open and discussing Parkinson's disease. Parkinson's disease in communities of color is often associated with secrecy, isolation, and hesitation about seeking care, and we've seen that this tool is helping to start to normalize those conversations and just make people a little bit more comfortable talking about Parkinson's.

Amasi Kuma 14:32 Thank you so much, Dr. Shah. Emphasizing the richness of diverse lived experiences among people with Parkinson's, can you share insights into the importance of recognizing and valuing these varied journeys?

Dr. Hiral Shah 14:48 I think it is so important that we uplift the voices of people living with Parkinson's and their care partners. We can't forget about the care partners, Amasi. When we hear directly from these people, we give them credibility, we uplift their voices, and this is how we can create the connection that's needed to take those first steps that are important in seeking care. I think the same is true as it applies to research participation. Only when people start to understand the lived experiences of people with Parkinson's, and some of the challenges they may have faced, can researchers and organizations also better understand what some of the barriers might be and how we can address those barriers and overcome them.

For example, I remember hearing a person with Parkinson's tell me that they were participating in a research study, and because of their Parkinson's, they were shaking, and they were taking an MRI. During the MRI, the technician said, "Can you please stop shaking?" I think this is just one small example of how understanding the experience of the person with Parkinson's can help us address some of the barriers to participation and engagement with care.

From a care partner's perspective, I've heard many times that care partners feel invisible in the clinical setting, in the office of the doctor. I think that when we create heightened awareness of these kinds of issues, clinicians can then pay closer attention to some of the needs of the care partner, and how the care partner might also have valuable insights that help us take better care of the person living with Parkinson's.

Amasi Kuma 16:32 Dr. Shah, you previously highlighted the story of one of your patients from a clinician's perspective. Can you elaborate on the significance of this particular experience, and how it underscores the importance of understanding diverse perspectives in healthcare?

Dr. Hiral Shah 16:50 I recently had a patient who was an 85-year-old African American gentleman, who came to me because he had trouble with his balance. He shared how, when he initially was having balance difficulties, he was falling and he thought his life was over. He didn't understand why he was having these falls—what was the cause of them—but he was imagining a future where he was no longer independent or able to do the things that he needed to do. He described to me that growing up in his community, he was often advised not to seek medical care if there was a medical problem because of this perception of mistrust of medical providers, given the historical aspects of slavery and the legacies of medical exploitation, such as Dr. Joseph outlined with the Tuskegee study, among many others. So he often hesitated when seeking care, but he came to see me.

We began to do an evaluation to try to understand the cause of his symptoms, and he was found to have neuropathy, or nerve damage, in his feet. Over the course of months, he said he kept coming back because I gave him hope that there was something that could be done so that he could better understand his condition. Though his neuropathy has not been cured or reversed, he feels much more comfortable living day-to-day and has found that he now shares what he's going through with his neighbors. In the past, he said that his neighbors kind of expressed, "Well, what's going on? Your walking has changed," but he said that he didn't feel comfortable telling them what was going on because it simply is not the norm—people keep these types of things, in his words, to themselves.

So, when I shared with him the PD Movers book about Parkinson's disease—and perhaps a different medical issue that he wasn't aware of—he was emotional and moved. He said that this was the first time he was seeing a resource like this that was developed for his community with his community in mind, and that was an incredibly powerful moment because he wanted books for his entire family to share so that they could understand better some manifestations of neurological disease.

For me, this was another "aha" moment that we need to remember that the people who come to us to seek medical care come with a whole lived experience, a whole history of their experiences with the medical enterprise. Unless we ask what their priorities are, unless we ask what their fears are, unless we ask them and meet them where they are and attempt with every medical visit to build trust, that person is not able to be truly vulnerable and express themselves. Once I really understood where this gentleman was coming from, what his fears were, and what he really wanted us to address in the office, I was able to be much more effective in my role as a neurologist.

Amasi Kuma 19:42 Thank you so much, Dr. Shah. Finally, the last question is stressing the need for a human-first approach in healthcare interactions. How does prioritizing the human element contribute to improved patient care, especially when dealing with conditions like Parkinson's?

Dr. Hiral Shah 20:02 Thanks for this question. I've been thinking about it a lot, and I think that it speaks to one of the issues that is a barrier when seeking care, and that is the power dynamics that exist in the medical office. I think often providers don't recognize this power dynamic and how people who are coming to seek care may not feel comfortable asking their questions, or may not feel comfortable challenging or requesting more information. By being human-first—I think being honest, being transparent, being authentic, and really listening to the person—allows you to make that more real and human connection with the person who is sitting before you.

I found that when I create a more human experience for that patient, rather than one where I'm rushing in and out of the room and not listening to the patient, I allow for those barriers to come down, for those walls to come down for the patient, where they can then be more human. It reminds me of when I'm sitting with a patient, and if I'm asking them if they have any questions or concerns, and they don't say anything and they're quiet, that actually is a red flag for me to stop and really pay attention to what might be happening in the room that's unspoken. People should be comfortable to ask their questions, but they often aren't, and so it's upon us as the clinician to try to create a more comfortable environment.

That might be by first trying to get to know that person a little bit better. What is the context with which they're coming to that office visit? What did their life look like before they developed a symptom that brought them to medical attention? What are their priorities? What are their goals? These are not conversations that necessarily happen in the first meeting, but it's something that we should try to keep in mind because when those bridges are built, when those connections are made, it allows for the person to be much more comfortable and vulnerable. Individuals who are coming to medical care are truly so vulnerable; they're really in a position of feeling disempowered. So I try very hard now to empower my patients, tell them how important it is for them to use their voice and tell their story, and to try to be as authentic as I can be and present with them in that moment, so that they can feel that I'm really committed and interested in their care.

Amasi Kuma 22:29 Thank you so much, Dr. Shah. I will now pass it over to Dan Keller.

Dan Keller 22:36 Thanks, Amasi. Do either of you have any comments or other insights about what the other person said that you would like to add, Dr. Joseph? Anything strike you about what Dr. Shah was saying?

Dr. Reversa Joseph 22:51 I just wanted to make sure that I addressed one of the key issues contributing to the disparity in African Americans in research and treatment, which is the historical lack of diversity in clinical research. Many clinical trials predominantly enroll participants from Caucasian backgrounds, and I think this leads to a limited understanding of how Parkinson's disease may affect other racial and ethnic groups differently. This lack of representation can result in gaps in knowledge regarding the effectiveness of treatments and interventions specifically tailored to the needs of the Black and African American population.

Addressing these disparities really requires a concerted effort from researchers, healthcare providers, and policymakers in trying to really increase diversity in clinical trials and research. I think we need to have a better, culturally competent type of care and outreach efforts to help really improve the awareness and engagement in the African American community. One of the things we didn't address is that community-based participatory research initiatives are important because it really involves collaboration between researchers and community members to help prioritize research questions and interventions that are relevant and meaningful to the Black and African American community.

I think that was one of the goals from the Parkinson's Learning Institute that we did—trying to help African American patients with Parkinson's disease and their caregivers begin to think about how research is done and how you can begin to form some of these questions. That was one of the tasks even in the Learning Institute, trying to come up with questions in terms of research that were important to them—so what are the things that most affect them by their Parkinson's disease, and how they would like to see that being addressed in research. We began to form these questions with them so that they can be involved, hopefully, with helping to prioritize these research questions for their participation and foster partnerships with diverse universities to be a part of research. So that was one of the things I wanted to make sure was addressed.

Lastly, one of the aspects I think would be important was just talking about challenges or successes witnessed in providing support for people with Parkinson's disease. One of the things is a common challenge: limited access to specialized care for Parkinson's disease. There are many patients who may not ever see a movement disorder specialist. Some are just solely being treated by their primary care provider. Some do get to see a neurologist, but not every Parkinson's patient is actually being seen and treated by a movement disorder specialist, so that does lead to significant gaps in care. We understand the complexity of symptoms in patients with Parkinson's disease, so managing all these symptoms really requires a multidisciplinary approach.

As well, Parkinson's disease has significant emotional and psychological impacts on both the patient and the caregivers. Addressing the emotional and psychological impacts of Parkinson's disease on patients, as well as their caregiver, and understanding that there's caregiver burnout, is vital to address the role that the caregiver plays and provide support for them.

I think one of the things that at least at our Columbus VA that we've done to try to help address some of these challenges is having telehealth services. I think that became a big thing during the pandemic, but we're continuing that forward because we realize that those living in rural communities do not have access to being able to see a movement disorder specialist, so telehealth services allow for access to those, especially in the rural communities.

The multidisciplinary team approach, I think, is a key success factor in treating patients with Parkinson's disease—bringing together a diverse team of healthcare professionals, including the movement disorder neurologist, physical therapists, occupational therapists, speech therapists, social workers, psychologists, and nutritionists, all on a team together, addressing the complex needs of patients is very important. The other aspect is tailoring treatments to the unique needs of each individual, so it's not a one-size-fits-all in Parkinson's treatment and care.

Lastly, just providing education and support for the Parkinson's patients, as well as their caregivers—and I think this was one of the things Dr. Shah mentioned in her discussion about the importance of education and using the PD Movers group to help provide that. I think that education and support is very needed as well.

Dan Keller 27:56 Well, thank you both. I really appreciate it. It's a lot of information, and I'm sure it will inform and enlighten a lot of our audience who've never really thought about some of these issues, but they're very important. So, thanks a lot.

Thank you for joining us in this special episode as part of Black History Month. We hope you'll continue to celebrate with us as we highlight articles and resources all month long. Read our blog post highlighting our research training Learning Institute tailored to the Black and African American Parkinson's community at parkinson.org/blog. Listen to our podcast episode titled Parkinson's Disease in the Black Community, featuring a woman with Parkinson's disease who has been highly involved in raising awareness about PD in the Black community, by visiting parkinson.org/podcasts.

If you're interested in getting involved in a Parkinson's research study, visit parkinson.org/pdgeneration. For resources on Parkinson's disease and the Black and African American community, visit parkinson.org/blackcommunity.

If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe, rate, and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Dr. Reversa Joseph is a Board-Certified Neurologist specializing in Movement Disorders and intraoperative monitoring. With a profound focus on treating patients with Parkinson’s disease, she employs a comprehensive and integrative approach. Dr. Joseph obtained her Bachelor of Arts degree from Columbia University, followed by her Medical Degree from Georgetown University. She completed her Neurology Residency training at Yale University and pursued fellowship training in Movement Disorders with a focus on Deep Brain Stimulation and Botulinum Toxin Therapy at Georgetown University.

Additionally, Dr. Joseph completed a fellowship in Clinical Neurophysiology at the National Institutes of Health, where she specialized in intraoperative monitoring and autonomic dysfunction in neurodegenerative disorders. Currently, she serves as the Director of the Movement Disorders Clinic at the Chalmers P. Wylie VA.

Dr. Joseph initiated a Parkinson's Multidisciplinary Care Team at the VA to enhance the care provided to veterans with Parkinson's disease. Utilizing a Whole Health approach, she integrates various modalities to offer comprehensive care for patients with Neurodegenerative disorders. Dr. Joseph is deeply committed to health equity and strives to eliminate health disparities in the care of patients with Parkinson's disease, reflecting her passion for ensuring all individuals receive equitable access to quality healthcare.

Hiral Shah, MD, is a Neurologist at Columbia University Irving Medical Center for the last 16 years.  She serves as the Medical Director of the Parkinson's Foundation Center of Excellence at CUIMC.  She provides clinical care for individuals with neurological disorders, with a specific expertise in Movement disorders including Parkinson's disease as well as Functional Neurological Disorders.  She has served as a consultant to the World Health Organization, has training as a Global Health and Aging Policy Fellow, Global Mental Health Scholar, and Community-based Participatory Research Scholar.  She serves on the Advisory Board for the Young Onset Parkinson's Network.  Her approach is to address the concerns of individuals and families in a holistic manner, including addressing the physical and mental aspects of their health condition.  Her research focuses on attempting to identify and address the factors that contribute to stigma and isolation with respect to Parkinson's disease and other neurological disorders.  

She is the Founder of the PD Movers, a group of AA/Black individuals and care partners impacted by Parkinson's disease and has developed an educational book, The PD Movers (www.pdmovers.com, https://www.neurology.columbia.edu/patient-care/specialties/movement-disorders/pd-movers-we-keep-moving-storybook) that utilizes storytelling and illustrations to create heightened awareness of Parkinson's disease in communities of color, inspire individuals to use their voice to uplift their health, and create connection.  This community-based approach to developing educational resources was highlighted in the following article: https://www.sciencedirect.com/science/article/abs/pii/S1353802023010155.  

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

As we celebrate Black History Month, we want to take a moment to appreciate and recognize the contributions of Black and African Americans to the Parkinson's disease community. In this two-part podcast episode series, we will hear from a panel of clinicians who will discuss educating the community about Parkinson's disease, building and maintaining relationships, and providing resources at the right time and place. They will also address the impact of the Parkinson's Foundation Learning Institute, which trains people with Parkinson's and care partners to become research advocates and learn to work collaboratively alongside researchers.

First, we'll hear from Kimberly Gamble, program coordinator at Atrium Health and President-Elect of the Parkinson's Foundation Carolinas Chapter Board. Later in the episode, Amasi Kuma, Director of Research Partnerships at the Parkinson's Foundation, will speak with Lance Wilson, who is a licensed social worker and the center coordinator for Jefferson Health's Comprehensive Parkinson's Disease and Movement Disorder Center. I started off talking with Kimberly about the work that she does with the Black and African American community. Kim, welcome. What work do you currently do in the Black and African American community regarding Parkinson's disease?

Kimberly Gamble 2:15 My first obligation is to educate the community, depending on where they are and how much they know, but to support them, starting from the Parkinson's 101 education through the mid and advanced disease. The second part is to connect the patients and families with the resources that they need while they're living on the journey with Parkinson's disease. My third function is the outreach and community education for the general broad PD community, and then the last function is the liaison between patients, families, and healthcare providers to connect everyone with the different resources, whether it's through education or outreach. My passion is the facilitating of the three African American support groups that I have started and been able to maintain virtually.

Dan Keller 3:04 I take it you discuss research studies and getting involved with research with them, is that right?

Kimberly Gamble 3:11 That's correct.

Dan Keller 3:13 Is it any different speaking with them versus a non-African American community?

Kimberly Gamble 3:20 I don't find that there is a lot of difference. I find that most of the communities have never been introduced to research, and I find that that is a common thread across all communities. I think with anybody, you have to be ready to receive the information about research, and building the trust and the partnerships is what I find doesn't differ from one community to the next. I think it's all in how the information is approached initially with the patient and the families, and that's where I work to educate patients and families, as well as the healthcare team that I work with, to better facilitate research in the African American community.

Dan Keller 4:06 I take it building trust is an ongoing and long process. Is that right?

Kimberly Gamble 4:13 It is. You have to build the relationship and establish some type of rapport with patients and families before you can even begin the conversation with research—is the way I approach it.

Dan Keller 4:28 What do people think about research? Do they think it's a big time sink and they don't have the time, or they're eager to get into it, or what they're going to get out of it, or what other people might derive from it?

Kimberly Gamble 4:40 What I find most is there are a lot of misconceptions about research—that they just don't understand research, they don't understand the process, they don't understand the why. So I think we as a community have to do better to educate on the why and how research is actually performed and the end results, and kind of connecting the dots as to when you participate in a research study, this information is going to help drive future treatment options for your particular disease state.

Dan Keller 5:13 What do you recommend for healthcare providers who are currently facing similar challenges?

Kimberly Gamble 5:21 The biggest strategy, I think, is to introduce the concept prior to the patients and families having the need. I think we wait and kind of rush because we have this research study that is here and now, and they need people enrolled, and we've never had a conversation about research with patients and families. So you have to introduce concepts early on in the conversations with people so that they understand, and that way, when you get to that point that you need them to participate, you've already laid that foundation of the relationship, and it doesn't require you taking up the majority of the time during one particular visit.

The second thing I think that is important and they have to pay attention to is active listening, you know? If you're introducing and talking about research to a patient, a person's nonverbal language and body language is going to tell you a lot about how they're receiving that information. As healthcare providers, I don't think they pay enough attention to that. To me, you can watch that, and you tailor what you say and how you say it to a patient so that the patient is able to receive the information that you're trying to share with them.

Dan Keller 6:33 In a larger sense—sort of a big, looking-down sense—do you have any recommendations for healthcare institutions and Parkinson's organizations that are looking to engage the Black and African American community? You've been talking about sort of the one-on-one, hands-on, but what strategies can these organizations and institutions use to encourage this?

Kimberly Gamble 6:57 I think it's the same thing—they have to incorporate it into the large-scale and the big future plans. As they're building program management plans and what their plans are, they have to incorporate this at the ground level. This is not something that you can just kind of pick up and think it's going to be done immediately or overnight. It's one of those that's going to take a give-and-take on both sides, and it's going to take time for that.

Dan Keller 7:24 Does it help to have a patient who is an advocate for research—someone who's already done a clinical trial or been involved in research—to talk with the other people who might be interested?

Kimberly Gamble 7:36 That is definitely a plus. Again, I think you have to see where the patient is in that process to actually see where it's going to be beneficial for them to talk to a research advocate. Research advocates definitely are helpful in that process, and we utilize those on a regular basis. I kind of call them my ambassadors, and so definitely talking from a patient perspective is going to hit better and easier with the patient and family. Sometimes, as a healthcare provider, you know, we're on the outside looking in, and we haven't been through that process, and we have to be able to share that with the patient. You know, I'm speaking hypothetically on this side—this is what I know about it—but to speak to a patient and get the patient perspective from a patient advocate is invaluable.

Dan Keller 8:27 I know to some degree what it takes. I volunteered as a healthy control for a year-long Parkinson's study here. One of the sites was the University of Pennsylvania, and I'm in Philadelphia. It does take some time commitment and effort, but there is great reward in doing it, so I think people can figure out whether they want to contribute this way, and it is pretty rewarding. Is there anything important on this topic we've missed, or you'd like to add?

Kimberly Gamble 8:55 Like I said, I think it's just one of those where it's definitely a partnership is kind of the first thing, you know? The education piece is really huge that we've touched on, and then just a collaboration and just time and understanding and listening to each other.

Dan Keller 9:13 Good, thanks. I'm going to toss it to Amasi now, who's going to speak with Lance Wilson, social worker. Amasi, take it away.

Amasi Kuma 9:23 Thank you so much, Dan. Such a pleasure to speak with you today. Lance, I wanted to kick off today's call with first having you share impactful work that you've done within the Parkinson's community. More importantly, really highlighting the positive changes and support you've been able to make to individuals with Parkinson's.

Lance Wilson 9:48 Sure, so I think that if I'm talking about the Parkinson's disease community as a whole, I definitely interact with individuals and their families and care partners in more of a case management type of role. So, helping them navigate the day-to-day employment and other needs that they might have along the Parkinson's journey, but I also act as an educator to kind of get them up to speed as to things they should know, things that would be beneficial for them to know, kind of take out some of the guesswork about what the Parkinson's journey might look like, and also outreach—because I also need to inform other individuals about Parkinson's and why it's important, and why people need to pay attention to it. So, I think collectively in those three realms specifically, I feel like my most impactful and changing contributions are put forth to the Parkinson's community.

Amasi Kuma 10:47 Delving into your work in the Black and African American community, can you paint a picture of the strategies you've employed to build strong relationships, engaging community health workers, and also emphasize diversity in your outreach efforts?

Lance Wilson 11:05 Yes, so in my case, being at Jefferson Health, this was, I think, something that a lot of the entities and organizations around me had tried to do single-handedly. So, in Philadelphia, we have constructed and kind of came together under Diversity PD. For us, that is our local regional organization, the Parkinson's Council, sponsored by David Finney, who is helping us reach out to and engage with the stakeholders and community leaders. So, when I'm mentioning those individuals, those people could be trusted organizations, they could be local health organizations, they could be religious communities. So, just kind of going out into the community and taking the information to the person and to the people, as opposed to waiting for them to come to one of our centers, I think has been impactful. Also, showing up to the events that typically are considered overlooked or not necessarily as widely attended—I think that even something as simple as a health fair has the impact to reach several people, whether it be educating them about Parkinson's or kind of drawing them into the cause to understand why Parkinson's is something that people need to be knowledgeable about.

Amasi Kuma 12:26 Thank you, Lance. Reflecting on your experiences, as you mentioned just now about in Philadelphia, could you narrate the story behind the necessity of your work there? How did you create genuine relationships within the community as you activate the local events and intentionally build connections that contribute effectiveness to your role beyond being a healthcare provider?

Lance Wilson 12:55 Sure, one thing that's helpful specifically in our group of Diversity PD is that we have representation from all of the major centers. So we have Jefferson Health represented, we have Penn represented, Cooper, the VA, two religious organizations, as well as Temple. And so if you create a net, you've pretty much covered most of the greater tri-state area and the greater Philadelphia region. I think by having representation from so many different organizations, it allows people to feel like they can trust the individuals.

When it comes to building those specific relationships, I think the most important thing is showing up. I think historically there has been this idea that "build it and they will come," and I don't think that that is a good model to use when you're talking about individuals who are from communities who have been marginalized and historically underserved. So I think that in regards to building those relationships, you show up, you show that you care, you build those intimate relationships. Having representation from different centers that they may or may not go to is certainly helpful, but ultimately it's really about maintaining those relationships by showing up, and you're consistent about it. You don't go in, do one event, and leave. You constantly show up, you figure out ways to partner with those local stakeholders and those community leaders.

Amasi Kuma 14:27 Exploring your active role in the Learning Institute, could you elaborate on its significance and share some of the notable contributions it's made so far? If you can give us a glimpse of what makes the Learning Institute a valuable asset.

Lance Wilson 14:44 The most recent Learning Institute that I had the ability to attend focused on the Black and African American community. I felt as though its significance is very hard to quantify. I think that there was, especially, an initial shock factor. I don't think that many of the people that attended were ready or necessarily were prepared to see so many other Black and African American lives that have been impacted and changed by Parkinson's, and so I think that its significance is otherworldly at this point because it created a safe space for other people of similar cultural and similar ethnic backgrounds—and all of the other things that come along with that—to have and share that space.

I think that my role in particular was simply just as the social work representative, to give insights as to why people might need social workers and dispel some of the myths around what social work is—since we don't, as Black and African American folks, always have the most positive thought process when we think of what a social worker might be introduced into our lives for. So that was my role there, but I also got to connect with many different people from many different places who were able to give me their story and kind of tell me about what their journey with Parkinson's has looked like, allowing us to connect and to kind of—again thinking of it like in a web or like a net—expand our reach and our understanding.

Amasi Kuma 16:19 As a social worker, what unique considerations do you bring to your interactions with Parkinson's patients that other healthcare providers might overlook? How do you approach holistic patient care, resource distribution, and tailor your support based on factors like education and literacy levels?

Lance Wilson 16:43 As a social worker, I think the considerations that I make are person-specific. I think that there is a general way to quote-unquote "social work," but special considerations would certainly be that I tailor my care based off of the assessment I make and just having conversations. You know, there are so many things that the chart can tell you and so many things that demographics can tell you on the admission paperwork, but getting to know people on a more intimate level and understanding how they connect and interact with their environment—not just in the clinic space, but what happens when they go home? What's happening to them during the week? What's happening to them as they are not in the clinic space, when they're in between those clinic appointments? Because I think that's the picture that we don't always see, especially clinicians, because they have a very limited time to engage the client—or the patient, rather—and their care partners in an appointment, which could easily be 30, 45 minutes, maybe an hour, and that's not a lot of time when three, four months have gone by.

So, especially for me, I get to kind of sit and bear witness a little bit more, and kind of really hear what's happening to them outside of the clinic space, and based off of that, I can provide brief therapy, I can intervene and connect them with resources that might have gone missed in the clinic appointment. So, a lot of my stuff is tailored specifically, and it's really based off of the assessment—biopsychosocial, spiritual assessment—and an understanding of where the patient and the care partners are to figure out what ways I can best assist them.

Amasi Kuma 18:27 Are there specific resources that you find yourself frequently sharing with your Black and African American patients with Parkinson's? And can you speak to the impact these resources have on their care and well-being?

Lance Wilson 18:42 Most recently, the resource that I've been sharing has been the PD Movers book that Dr. Shah and Dr. Quinn and some other individuals put together at Columbia. I think it has been very impactful. I think that we constantly hear the phrase that "representation matters," but I don't think that people understood what that meant until that book was able to be shown, having Black and African American figures navigate their Parkinson's journey. It acted as a lightning rod for other people to want to tell their story and other people to resonate with the story. Some people even use that book to have conversations with children and to provide information about their diagnosis to their family, so I think that's probably the number one resource most recently I've used to help facilitate conversations and to kind of normalize a conversation about what it is—not just about Parkinson's, but Black and African American folks and Parkinson's.

Amasi Kuma 19:45 Considering your experience, are there any resources you wish were more readily available among healthcare providers to address disparities in care and services, particularly for individuals dealing with Parkinson's?

Lance Wilson 20:01 So, that's a hard question, because I think that some of the resources don't necessarily exist. I think that the way that we think about reaching certain communities—the resources, or building upon the resources that we already have—is the quickest and the easiest approach, but I think that we need to consider that the resources for healthcare providers to address disparities may not be readily available. It might need to be something that we create.

I think that specifically when we're talking about the Black and African American community, resources have to be grounded; they have to make sense to the community that they're being provided to. And so I think that there's a call on the community. I think that there is a call for individuals to go out into that community and build those relationships and ask the community what they need, but the flip side to that is, how do you also avoid causing damage? How do you avoid tokenization of a Black and brown body? When I think of what resources do I wish were more readily available, I don't know if I have a specific answer, because I think that this work is ongoing and there's no clean "put this in the box" type of way of thinking about this, if that makes sense.

Amasi Kuma 21:27 Thank you, Lance. I will now pass this over to Dan Keller.

Dan Keller 21:33 Either Kim or Lance, from what you heard from the other person, is there anything you'd like to add or even ask?

Lance Wilson 21:42 I think that the other thing I wanted to point out—or I wanted to ask Kim, because she also attended the Learning Institute—what was your opinion about the readiness or the insights that the Black and African American individuals that we were all engaging with, their feelings and thoughts and insights about research after the Learning Institute?

Kimberly Gamble 22:07 I kind of agree with what you said. I felt like the fact that this was probably the first time that most of them had been in a room with other Black and African Americans living the Parkinson's journey—I felt like that was very overwhelming for them at that point, and I think it just takes time for that to kind of sink in. I felt like, you know, the first part, and really probably two-thirds of the journey while we were there participating in the Learning Institute, was where their mind focus was—that, you know, there are others, and coming together to build that community and a network, and just having conversations and being in the same safe space for them to actually converse with each other. So I felt like the Learning Institute came on the back burner for that part of it. I felt like the Learning Institute is a great tool to use in the community, but I feel like we could have better prepared and maybe done some additional work on the front end before we sit them down and start trying to teach them how to become research advocates. I feel like they were just not ready to absorb that information at that point.

Dan Keller 23:26 Lance, you agree?

Lance Wilson 23:28 Oh, I absolutely agree. I think that there was certainly a shock factor that happened, and due to limited time, programming had to move on, but I think that certainly some time needed to kind of happen to let some of that shock dissipate. That's what I witnessed as well.

Dan Keller 23:46 Well, as Kim said earlier, you build trust over time. Maybe revisiting it and bringing people back in, or working with them in their communities, can help dispel that shock aspect. I really appreciate it. Thank you both for all the time and the information. You've really rounded out the subject for our listeners. So, thanks, Amasi. You got anything else to add?

Amasi Kuma 24:11 I just want to sincerely thank Kim Gamble and Lance Wilson. They're leaders within this space. I'm really honored to be able to have them as a part of this podcast today.

Dan Keller 24:34 Thank you for joining us in this special episode as part of Black History Month. We hope you will continue to celebrate with us as we highlight articles and resources all month long. Read our blog post highlighting our Research Training Learning Institute tailored to the Black and African American Parkinson's community at parkinson.org/blog. Listen to our podcast episode, titled Parkinson's Disease in the Black Community, featuring a woman with Parkinson's disease who has been highly involved in raising awareness about PD in the Black community by visiting parkinson.org/podcasts.

If you're interested in getting involved in a Parkinson's research study, visit parkinson.org/pdgeneration. For resources on Parkinson's disease and the Black and African American community, visit parkinson.org/blackcommunity.

If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe, rate, and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening. Thank you.

Lance M. Wilson is the social worker, outreach and education coordinator at Jefferson Health’s Comprehensive Parkinson’s Disease and Movement Disorders Center in Philadelphia, PA. Lance is a Licensed Social Worker (LSW) in the State of Pennsylvania and holds a C-SWHC (Certified Social Worker in Health Care) and ASW-G (Advanced Social Worker in Gerontology) which are both are specialty certifications from the National Association of Social Workers. Lance has professionally worked in the medical, mental health, and public health field for over a decade. In addition to his work with individuals impacted by Parkinson’s Disease and their care partners, Lance is also working on his PhD in Social Work at Widener University, where he hopes to add to the research of best practices within the Parkinson’s community.

Kimberly Gamble started her journey with the Parkinson’s community by God’s grace in 2004 when she applied for a position as a sleep center coordinator. By the end of the interview with the Director of Neurosciences, Kim found out she was overqualified for the position and was recommended to apply for the movement disorder coordinator position. Kim’s role as a Movement Disorder Center Coordinator spans across 20 years and three healthcare systems. Her job includes care coordination, patient navigator, community outreach and education, project management and support for patients and families on the journey with Deep Brain Stimulation (DBS). Kim is the one point of contact for patients, staff, physicians and the PD community. Her purpose is to be a resource and connect individuals with the resources needed on the journey living with PD. Kim’s passion is to spotlight diversity and inclusion in the PD community. Knowing that PD is not an exclusive diagnosis, she works to educate underrepresented communities, provide resources and connect them to others who look like them and share their experience. Kim’s goal is to remove barriers, educate patients and families and empower them to live their BEST life.