One afternoon this past summer, I sat in a room with hundreds of members of one of the country’s oldest Black fraternities. On stage were Black doctors from cardiovascular subspecialties like interventional cardiology and electrophysiology, experts in less-invasive therapies to address some of the deadliest conditions for Black men. The audience was made up of professional men, leaders in their respective fields, who had insurance and access to care—yet the data tells us that Black men of all backgrounds consistently suffer worse health outcomes at higher rates than their white counterparts, from heart disease to prostate cancer to amputations. Why?
As a white woman, I listened to the voices of the people in the room and reflected on the ways I could increase my proximity as an ally to the Black community and champion needed change. As a former CPA and healthcare administrator, the desire to follow the numbers is hardwired in me — an inclination that serves me well among the scientists and clinicians I work with today leading a health equity program. We can’t “close the gap” in healthcare without a deep, clear understanding of where exactly those gaps lie and why they exist in the first place. It’s a need that I’m proud our team is helping to address, but something came up in that room that transcended the hard data and got at something much softer.
Before anyone is a patient, they’re a person. And in that room this summer, and others like it across the country, I’ve heard similar stories over and over again from people of color and women who weren’t becoming patients soon enough — people who weren’t getting treatments until things were dire and it was too late for less-invasive options that could have maintained quality of life. Yet insurance coverage and even the desire to seek care weren’t the problem. What were we missing?
The feedback we received after the event gave us a clue. “I didn’t realize how much I needed that conversation,” we heard again and again.
Conversation? It seemed that a new data point had emerged—one that warranted further scrutiny.
Taking our first steps
The traditional model in health equity work has focused on screenings: if you could meet people where they are—at a sporting event, for example—and screen a large number of people at once for common conditions like hypertension or diabetes, you’d identify those who needed further treatment and open the door to a care journey. Maybe one in ten didn’t know they had high blood pressure; maybe one in a thousand was actually in crisis and needed to be rushed to the hospital for emergency care. You’d give out information and recommendations and off they’d go.
Screenings are a critical tool to address disparities in care delivery—but all they can do is open that door. That model didn’t account for the longer journey patients would undertake to seek long-term solutions to treat or manage their conditions. Even when identified in the system, Black people and other diverse communities remain underserved.
What I heard in that room was that people aren’t yet even discussing the journey, much less embarking on it. No one was talking about what might lie on the other side of the door. When people talked about the fact that Black men are twice as likely to get a below-the-knee amputation due to untreated peripheral artery disease, they were really remarking on the fearful silence that surrounds this crisis.
Such silence can be toxic: lack of knowledge is one factor we know can keep people from seeking medical attention for early symptoms of heart and vascular disease, contributing to worse outcomes. But, when people seeking medical attention are dismissed—when their voices go unheard—we create a tortuous journey stacked against the Black community and full of barriers to receiving much needed care. But, if we can help facilitate the necessary change, community conversation could create space for collective action.
Roadblocks on the care journey
If you were going on a journey—say, a road trip—you’d be sure to map out your course in advance. The patient journey is little different. We needed to show people a map with all of the possible stops on the heart and vascular health journey—including the potential end points, hearing from physicians that specialize in the treatment of heart and vascular disease, including the different stages that might lie ahead with a particular diagnosis. Taking that first step of a screening wasn’t enough, particularly in vulnerable communities that have been so poorly served by the medical establishment in the past.
Creating moments of concordance that allow people to hear from physicians before reaching the exam room as a patient is vital. Beyond reducing the stigma of some conditions, these conversations illuminate the roadmap and give more people a sense of how to navigate their own journeys.
Where we go from here
As we realize the importance of community conversations, companies like device manufacturers may have a distinct role to play as conveners within the wider healthcare ecosystem. We can bring together healthcare providers who have common bonds but may otherwise see each other as competitors. By using our own data to identify at-risk populations for particular disease states, we can identify effective partnerships with grassroots organizations like Black Health Matters to deepen ties in more communities. Our grounding in research and development, with its requirements of listening and empathy to effectively solve problems, might even predispose us to be more comfortable convening than lecturing from up high.
For us to be effective in reducing healthcare disparities, we need to take into account the evidence-based data — my own native language — while also recognizing that not every need can be quantified. It is possible to take an approach that is both evidence-based and human-centered. The patient experience is always a personal one.