Patient Advocacy for People of Color and Addressing Health Equity

Jun 23, 2020
We asked Kistein Monkhouse, MPH, the CEO & founder of Patient Orator, a digital storyteller, to talk about patient advocacy specifically for people of color.
Kistein Monkhouse, MPH
CEO & founder of Patient Orator

As a video blogger, you interview a range of thought leaders in healthcare including many patient advocates. How is patient advocacy different for people of color?

As a video blogger, and producer of Patient Orator’s video content I’ve interviewed people in almost every atmosphere, from the streets of NYC to the streets of Milwaukee and Hawaii, as well as interviewing people in more formal settings which included healthcare conferences. With that I would say that African Americans and people of color experience in healthcare are significantly different. As a patient myself I’d been discriminated against and received delayed treatment and poor pain management. Unbeknownst to me, there are deep historical ties to how the medical community perceives people of color in the medical system as having tougher skin. An analysis found that “black patients were 40% less likely to receive medication to ease acute pain and Hispanic patients were 25% less likely” Lisa Rapaport, Physician's Weekly. Therefore people of color and lower-income communities tend to advocate for their voices to be heard in clinical settings, and for equal access to healthcare.

In a recent interview with Teresa Wright Johnson, she shared with me her frustration around existing systemic racism and socioeconomic barriers in healthcare, “Diversity and inclusion matter to me. Who is anyone to tell me I don’t have a right to proper care and health equity because of my race, gender, or socioeconomic status?”. The issue of access to equitable health is one that is prominent among community advocacy groups and grassroots organizations. Unfortunately, these disparities are not a focal point of those that are leading the charge in healthcare discussion particularly at healthcare conferences. In addition to people of color receiving lower-quality care, lower-income communities face incredible challenges to healthcare. Meet Laura, a young woman I met on the streets of Detroit Michigan. Her story has stuck with me throughout my video blogging journey. Laura shared that she had lost her left eye and experienced kidney failure because she had no health insurance. Her call to action was to treat people like human beings.

On the other hand, patient advocacy for patient advocates found in prominent spaces, whose stories are highlighted through television interviews are people from the upper-middle class and/or are caucasian. The advocacy is significantly different from lower-income communities and people of color. A notable difference is an advocacy for health data accessibility. We know that the lack of interoperability impacts the patient’s experience and can cause issues such as medical errors and unnecessary spending. Patients that advocate for health data accessibility are more privileged than those that live within areas that experience digital redlining, those that can’t afford a mobile device or a smartphone to receive vital information about their health. I interviewed Amy S Sheon, Ph.D., MPH , Executive Director, Urban Health Initiative. Dr. Sheon shared “There’s a disconnect between healthcare pushing for online connectivity with patients, moving beyond the walls of the health system but not realizing that particularly low-income patients and older patients may not have very technological advanced devices, if at all. They may not have data plans, broadband at home, or the skills to use patient portals”. The disconnect between the haves and the have nots is clear. Beth Landon, MPH made an excellent point in an interview with Patient Orator. She stated that “Location, cost, and policy can either act as barriers or enhancers in both access or care quality.” At this particular point in history, the healthcare industry has a unique opportunity to coincide with the difference and bridge the gap between the haves and the have nots.

As a result of the pandemic and recent protests about police violence, there is a stronger focus on how people of color are affected. What do you see as the factors we need to pay attention to?

First and foremost, we have to acknowledge that racism exists. That said, it is critical that every healthcare organization across the United States put systems in place to ensure that those on the frontlines of care delivery are not carrying biases in addition to making healthcare more accessible. I recently wrote an article suggesting steps for leaders in the healthcare industry to take to combat racism beyond acknowledging that it exists.

Racial disparities in healthcare are telling of how significant the problem is from an outcomes standpoint. COVID19 exacerbated the disparities and brought these issues to the forefront. Based on early data dated back to April 2020, 70 percent of people who died from COVID19 in Chicago are black although African Americans only make up 29 percent of the population. There are similar reports form Propublica which indicates that black people account for 81 percent of the COVID19 related deaths in Milwaukee. There are a series of underlying issues that could cause these inequities many of which are tied into public policy in one way or another. For example population density, access to health insurance, occupation, i.e., while many were social-distancing, lower income families and people of color were on the frontlines working essential jobs to help keep America running. Health systems must actively work towards meaningful engagement with communities of color to help address these issues. Social determinants of health can no longer be a topic of discussion without action. Investing in addressing underlying causes to poor health outcomes and working towards improving the health of all populations is critical.

As a Black woman, how do you think the healthcare and health IT industry needs to respond to the current dual crises in the U.S.?

As a black woman that has experienced discrimination and barriers to access healthcare, I would say the healthcare industry could benefit from innovators like myself that are using health IT to bridge disparity gaps. Black women entrepreneurs are the most disinvested group of entrepreneurs in the US. Yet, we are uniquely positioned to address the needs of underserved and underrepresented communities that we are apart.

In your new movie “Humanizing Healthcare”, what are some of the barriers to patients you find at different points in the healthcare system? Do these disproportionately impact people of color?

Humanizing Health Care is a narrative driven emotionally paced documentary about healthcare experiences in the United States. The film explores deeply rooted systemic issues across the healthcare ecosystem and the barriers they present to people at each touch point in care delivery. The project is produced by me as the storyteller innovator that has captured the stories of patients, frontline health care workers, policy makers and everyday Americans as they navigate the healthcare system. Dive in and learn about the emergence of institutionalized healthcare delivery in the US and the call to action from Americans to humanize healthcare.

Hear more from Kistein Monkhouse on HIMSSTV