February Volunteer Spotlight: Nichole Davis

Nichole Davis began volunteering with NPAF in the fall of 2020. A self-starter, Nichole has not missed a beat since she started volunteering contributing to multiple grassroots campaigns and initiatives. Learn more about what drives Nichole and her advice to help others get started.

Describe the advocacy work that you’re doing in your community and what motivated you to start? 

My passion for patient advocacy started with self-advocacy. I learned the importance of patient advocacy before my 13th birthday. Growing up, I was a pediatric patient who had been diagnosed with a handful of chronic health conditions by the age of 12. I spent the majority of my childhood and my teenage years back-and-forth between the hospital, and inpatient visits, home, and school. I had been diagnosed, misdiagnosed, and re-diagnosed more times than I can count.

As a full-time patient and full-time student, I had a solid knowledge of the role of a provider in healthcare. Providers are supposed to care and listen to your concerns when you don’t feel well. This was not necessarily the experience I had living with pain disorders. I often felt that I wasn’t being believed and that it was all in my head. It WAS all in my head; it was all in my nerves. I remember one neurology resident who fought tooth and nail on my behalf with his attending who had just unknowingly misdiagnosed me. My parents weren’t medical professionals, I knew my body, and the resident knew the facts, so he went to bat for me. If it wasn’t for him speaking out the way that he did, I would not be confident in telling you I’d be here today. I realized at that moment, patients don’t just need doctors, they need advocates. They need someone external to the emotion to articulate facts and push for solutions.

In college, I started getting involved with national organizations that gave people managing chronic illnesses a platform to talk about their experiences in healthcare. In sharing my perspective and collaborating with other advocates, I decided to become a Board Certified Patient Advocate (BCPA) and start a private patient advocacy practice. I went on to become, what is believed to be, the youngest advocate to have passed the BCPA and started Wayfinder Patient Advocates, LLC, based out of Cleveland, OH.

Possessing a love of health law and policy, I started advocating for patients through legislation. I am learning to educate lawmakers on how the bills they pass affect the healthcare of patients all over the county. Last year, I founded the non-profit organization The Patient’s Podium, an organization that connects patient and their families with the national organizations that can allow them a platform to advocate to government officials on issues relevant to their specific disease. Advocacy saves lives in a way that empowers the patient and educates the provider.

What advice would you give to volunteers who would like to do something similar? 

I would advise other volunteers to just jump in. I used to be so concerned that I would tell my story and people would only see me as the illness. Thankfully, I was mistaken. I came to terms with the fact that this was part of my story, not the entire thing. It was more damaging, in my opinion, to keep my experiences silent in an attempt to suppress the past, than to talk about what I went through and potentially inspire someone else who may be at that point in their life now. When I began volunteering, I didn’t know what I could bring to the table until I started getting involved in programming and realize that my experiences were relevant to the topic at hand. I would encourage volunteers to not be afraid of being visible. Yes, people may learn about the tougher parts of your journey; however, they will also have the ability to see you for what you are now: a survivor, and advocate, and a beacon of hope.

Since you’ve been a volunteer with NPAF, what are three things you are most proud of? 

Honestly, I’m extremely proud of everything I’ve done here at NPAF. If I had to pick three things, I would have to say I am most proud of participating in the #GetCovered Campaign, meeting with Senator’s office about the importance of Needs Navigation, and working with the Be a Hero, Make a Plan Campaign.

As this is Black History Month, we wanted to take this as an opportunity to speak on Black health and advocacy. Why do Black patients and health care professionals need to be informed patient advocates?

Anyone who knows me knows this is extremely close to my heart, as a woman of color myself. My realization of the intensity of racial disparities in healthcare between Black patients and healthcare professionals and their Non-Black counterparts came from my formal education. As a public health professional studying epidemiological concepts like morbidity and mortality, there are red flags across the board for African Americans and Black people. It’s not a secret that people of color have worse outcomes in healthcare than their non-black counterparts in categories spanning from infant mortality, maternal health, diabetes complications, etc. Some factors that contribute to this race-based gap in disparities are health literacy, comfort in speaking and trusting your health care professionals, access to care, affordability of care, healthy support systems, etc. Black patients and healthcare professionals need to be informed patient advocates so that they can safeguard themselves from the ramifications of inattention or disengagement from their clinical teams by being prepared to advocate for their symptoms and illnesses. Being informed advocates empowers them to continue to shine light on these issues, keep them at the forefront the conversation, and educate providers and other key players in health care how to better support and engage this diverse population.