Lived Experience Is a Key to Health Equity

JOEL BERVELL: How well do we connect the science and medicine in health care to social science in the quest to improve outcomes for people who become patients, and how much of a role does race play when we look through this dual lens and look more closely? Those are the core questions guiding the work and career of my guest today on The Dose, Dr. Cheryl R. Clark, a clinician, researcher, and educator at Brigham and Women’s Hospital and associate professor of medicine at Harvard Medical School. Dr. Clark serves as associate chief of the Division of General Internal Medicine and Primary Care and oversees equity research and strategic partnerships to support health equity.

She’s also the director of the Leadership for Health Equity Pathway for the Internal Medicine Residency program, developing physician leaders, working on innovative strategies to confront social and structural disparities as part of the work in achieving health equity in the United States. Dr. Clark is also the inaugural executive director of the Massachusetts League of Community Health Centers’ new Institute for Health Equity Research, Evaluation, and Policy, a role she fills in addition to her appointments at the Brigham and Harvard Medical School.

With so many aligned interests in our work, I’ve been very much looking forward to this conversation. Welcome to The Dose, Dr. Clark, and thank you so much for being here.

CHERYL CLARK: Thank you so much for having me. Looking forward to our conversation.

JOEL BERVELL: Absolutely. So your work is broadly around integrating social determinants of health into science. For people that don’t know, what does that entail and what kind of data is missing right now?

CHERYL CLARK: Yeah, and I think a lot of what has driven me and what matters to me is understanding how we take care of people in their full humanness. I grew up in a place called Harvey, Illinois, south of Chicago, and it was a really warm, connected place. It also was a part of the great migration. Many of us identified as being African American, our families had migrated north from the south, looking for opportunity, looking to have lives that we could shape ourselves rather than the lives shaped by structural racism that we had often endured.

And so I brought that lived experience with me as I thought about what I wanted to do with my own career. I knew that I was interested in science as a kid, and I was also very lucky to be introduced to scholars who combined this idea of social science and clinical medicine. A woman named Deborah Prothrow-Stith, who some may know as a woman who had been the dean at the Harvard Medical School, wrote a book called Deadly Consequences that changed the field of public health and helped us to think about the way that we see violence, interpersonal violence happening in our communities, and how that really ought to be contextualized. So I had personal experiences, as well as the benefit of having scholars who come before me write about this in ways that really inspired me to combine a career in social science scholarship alongside clinical practice.

JOEL BERVELL: What kind of data would you say is missing right now within the field?

CHERYL CLARK: I currently serve as one of the investigators of a study called the All of Us Research Program. It has been, I think, an interesting journey to understand how to study and how to provide data that really puts people in their context. You may have their now electronic medical records and understand, are they showing up for appointments, are they taking their medications? But do you also have really robust information about their interpersonal relationships? Are they lonely? Are they experiencing discrimination when they come into care?

So part of what we are missing in terms of data are the kinds of experiences that really give us a better insight into the whole person, that social science data, as well as the clinical data, and to understand how that information gets into our bodies and shapes our health or shapes our predisposition to illness.

The All of Us Research Program is one of the largest programs that the NIH [National Institutes of Health] has funded and it’s been dedicated to collect that information. I was one of the scientists who helped to lead the construction and collection of those kinds of social data for the All of Us Research Program as a part of understanding health, well-being, and risk factors for disease.

JOEL BERVELL: I wonder if the inclusion of social factors in the scientific field faces any resistance or challenges. Is it not really a science to some people in medicine?

CHERYL CLARK: I think that there has been a real revolution and a real understanding that our health at the individual level, even the ways that we deliver care, are all very much shaped by our social environment. I think that this has become a mainstream idea, this idea even around the ways that we treat each other.

JOEL BERVELL: How do you think further integration of the social sciences changes the ways research is conducted, evaluated, and distributed today? Do you see meaningful advances and, for example, what does peer review really mean and how do we have it in a space like this? And then, of course, are there enough researchers of color to have those peer reviews?

CHERYL CLARK: I think that one of the most recent movements has come during COVID, during the pandemic, and as the nation grappled with the murder of George Floyd, Ahmaud Arbery, Breonna Taylor, there was a big conversation that happened I think obviously across the country but also within academic medicine. It was a time when we had a larger, a more focused and concentrated conversation around who gets to build knowledge? How do we think about publishing? How do we make sure that we integrate multiple experiences into our canon or our clinical and public health understanding? And there has been a greater attention toward making sure that voices are elevated, and several journals have made changes in leadership and have also launched new programs to increase the training and the opportunities for leadership. So I think those are all really good and important conversations that are currently being had.

JOEL BERVELL: One of your current projects focuses on community health centers, how and why these were founded during the Civil Rights Movement, and the impact they’ve had on their communities. One in particular, started in 1963 by Dr. Robert Smith, the Mississippi Family Health Center in Jackson, was that state’s first clinic providing care regardless of a patient’s ability to pay. That meant first-time access to health care for a lot of Black people. What’s happening there today that you find inspiring or even scalable?

CHERYL CLARK: So I was very lucky. Another just personal story. I have also done research around heart disease. The Jackson Heart Study is one of the longest-lasting studies of heart disease in African Americans in the country. So I went down and was in Jackson, Mississippi. I should mention my family actually, my mom’s family, is from Mississippi, so it’s a little further away — West Point. But I went to Jackson and just had the honor of sitting with a physician, Dr. Robert Smith.

And Dr. Smith, as you mentioned, is one of those civil rights leaders who, during his early career, was one of the doctors who supported Freedom Summer in 1964; this is the 60th anniversary. Between June and August physicians, about a hundred or so physicians and health care practitioners came to Mississippi and other cities through the South to provide medical care and to support the activists that had been convened by Bob Moses and others to demonstrate against segregation, to protest for the right to vote, and to deconstruct and desegregate the South. Many of those activists, or none of those activists really, could get care. It was legal to put up signs to say that colored people, African Americans cannot come here to get health care. And many of the people who lived in Jackson could not get care that was structured and respectful.

So Robert Smith and Dr. Aaron Shirley and others bound together and worked with physicians from northern cities to provide care for those folks and those activists. And after that intense period, those physicians sat together and asked themselves, how can we put together a system of care that would be durable, that would be directed toward the care of African Americans and others in these places that haven’t been able to get this care? And not only do we want to deliver medical care, but we also want to deliver health care. We want to be able to make sure that if people need access to education, that we build those links. If people need access to employment, well, let’s make sure that we hire people in our own communities to work in the health center.

And out of that movement, what are called federally qualified health centers, which were ultimately funded through what’s now known as HRSA, Health Services Resource Administration, those centers were designed to provide what we now talk about as social determinants of health. And so it’s important for certainly folks who are going into the medical profession or public health to know these stories, but I also think it’s important for just the general public to know how much embracing diverse perspectives makes care better for everybody.

JOEL BERVELL: I want to talk a little bit more about how we can use these stories and the data, not just to improve care for people but to improve how we are trained to care for people. I’m a medical student right now, and I’m engaged all the time in learning, and I do quite a fair amount of thinking about what I’m being taught and how we’re being taught things, whether it makes sense, whether it’s inclusive, whether it has that historical context behind it. One of your initiatives brings residents at Brigham and Women’s Hospital in Boston who are in the Leadership for Equity Pathway down to health care–related civil rights centers in the South. Can you talk a little bit about the intentions of the program, how it was developed, and why? And I’d love to discuss the impact you’re seeing that trip have because I think it’s such a unique thing that is included for a residency training.

CHERYL CLARK: Absolutely. So the Leadership for Health Equity Pathway was founded at the Brigham and Women’s Hospital around 2018, and we had these conversations around equity and what could we do to support residents. It was also during a time of a lot of political discussion and activism after both the murder of Michael Brown and events in Charlottesville, and we wanted to provide a setting that could make a safe space for having these conversations and for also trying to do some visioning. What can the future of health care look like?

We had global health, and one of the largest and longstanding pathways was a big model for us founded by Dr. Paul Farmer, just a luminary in terms of thinking about what justice and health looks like. And we wanted to provide opportunities to look at domestic or local examples. And so the Leadership for Health Equity Pathway is born out of those conversations. There are going to be some physicians who will have that as a central motivating feature of their careers, and we wanted to provide a space for those physicians to get together to influence each other and network and get mentorship.

And so as part of some of our work, we did once go down to Jackson, Mississippi, or we went over, I should say, and we were able to meet folks like Dr. Robert Smith and others, and to connect this desire that a lot of residents have to work in what are called community health centers or federally qualified health centers that we talked about, but to also understand a bit more of that history and to hold hands and break bread with folks who had been instrumental parts of establishing that movement and to get that visceral sense of what leadership looks like.

So it’s really important to have these historical models of how people were able to translate love into action. So I wanted our residents to have that model and to see that work and to be able to use that example as they collaborate with each other and innovate. That particular trip was an impactful way of understanding what vision and love and equity can bring to health care if we prioritize it.

JOEL BERVELL: I think that’s so important, what you just said, especially the prioritization piece of it. I think when you get to residency, and obviously still in medical school, but I’ve seen from the outside from hearing from people, especially my peers that have gone into residency, how difficult it can be to center that humanity when you’re in some ways running a rat race of working 80 hours plus a week. But when you have the intentionality, when programs prioritize, making sure that equity is embedded in a system, you learn it as you go through as opposed to having to think of it as an afterthought. Thank you for the work that you’re doing there. There’s also a policy component to this kind of resident training. How is that integrated and why?

CHERYL CLARK: Absolutely. And so part of what we want to make sure that residents have a chance to do is we want to make sure that all physicians have the networks and the relationships that they need to help generate that innovation and creativity. And we also want to make sure that we understand very well the systems and the structures in which we’re operating in, how to optimize some of those and where needed to be able to advocate for change. Dr. Bisola Ojikutu is the commissioner of public health at what’s called the Boston Public Health Commission and has been extremely generous in her time and mentoring and reaching out and helping our doctors in training to understand more about government and how public health is run.

JOEL BERVELL: And are there peer programs at other hospitals or medical schools? Is this a current trend of what’s happening? I guess I’m curious about if there’s a broader conversation or movement going on to integrate this kind of study and thinking it into medical training. Because for me, it feels like it’s emerging practice, but it may be possible that it’s embedded in other systems as well.

CHERYL CLARK: This has absolutely been a trend. A look to programs that are very longstanding, for example, social medicine programs in San Francisco, in Boston, Cambridge Health Alliance. There are multiple conversations, I would say, around what should doctors know and how should doctors be prepared to go out in the world?

JOEL BERVELL: Yeah. We’re kind of coming to the last few questions, but I wanted to ask about another project focused on emancipatory research. What do those two words mean next to each other and what’s the methodology? I’d love to help listeners understand what that looks like in practice. Is the foundational idea that even our discourse and the way we talk about research inherently biased or is there something else?

CHERYL CLARK: Thank you. And so I’ll give a little context to that. One of my new roles — I’ve been in this role for about eight months now at this taping — is as the new executive director and senior vice president of the Institute for Health Equity, Research, Evaluation, and Policy at the Massachusetts League of Community Health Centers. And part of what health center leadership deemed is that it would be important to have technical assistance to embed resources for scholarship, for conducting research and evaluation. Part of the framework that we think about is a term that we’re all sort of putting together: emancipatory research. If you are in, for example, African American communities that, as we mentioned, either descended from enslavement or have this history of structural inequity in the United States, we have not benefited or have been actively exploited or injured as a part of science.

So part of what we want to do is extend that. Community-based participatory research is a way of calling that out, for example, saying that we need to do our science collaboratively, that academics and clinicians and clinician scientists and communities need to work together and flatten power hierarchies and do that work.

I think that we can take this paradigm further and that we can hold ourselves accountable to two things. One, to make sure that we invest and build the structures and support the structures that will ultimately do the work so that when we fund a research project, the equipment, the way that the research is framed really is done and assembled to make sure that it’s sustainable and that it uplifts the communities and organizations that are doing the work.

And the second principle is that we actually hold ourselves accountable to change. I think what was really transformative about our experience in COVID was noticing just how quickly we could stand up infrastructure, how quickly we could take work and implement it and hold ourselves accountable for it because there was a need to do that. And so this idea of emancipatory research is a new term, and we are really excited to continue having these conversations to build it out because there’s really very little literature around it, but it at least has those two kernels. That part of what we want to do is make sure that the investment and the structures that are embedded in communities are supported and that the research is led by folks who actually can carry out the work, like community health centers that are actually taking care of patients.

And then the second is that we use methods that are rapid cycle, that we use evaluation, that we change the way that we think about how research is typically done. It can be rigorous and still hold ourselves accountable for impact on the ground as defined by folks who are engaged in the work.

JOEL BERVELL: And I love that that word accountability has come up multiple times in this conversation, and I think everything that you’ve said about the power of emancipatory research, really giving communities the resources and the ability to be able to do the research themselves in their own communities when they understand their problems. I think when you give people who have been disadvantaged the opportunity to be able to, one, tell their own story, but, two, do their own research, and that comes with the funding and the intentionality behind it, changes can be made and research questions that weren’t previously asked can be finally answered.

I want to close out this conversation with some of your thoughts about what you see that is encouraging you and your work. It seems like there’s been a lot more acknowledgement of the realities of what systemic racism has done to people of color in general and people without access to care. You’re based in Boston, and as you mentioned earlier, you have strong ties to health care communities in the South, especially around Jackson, Mississippi. Can you talk a bit about the overall space today and what kind of coordination there is amongst various initiatives or with shared or similar goals? I know it’s a big question, but how do we get the most benefit and ultimately improved outcomes for patients?

CHERYL CLARK: It is a very big question, and I think what I might leave you with and leave your listeners with is just that part of what we need to make sure that we do is that we don’t silo health care. When we think about the definition of structural racism that you mentioned or structural inequities, what we are talking about are interlocking and sort of mutually reinforcing systems. And what that means is that you don’t get good outcomes for people if you don’t think about the context in which we live. So if we are not investing in education, higher education, making sure that everybody is able to express their optimal talents in society, if we aren’t making sure that we are committed to making sure everybody has a home and that we are looking at equity in terms of economic mobility, then we don’t have the framework that we need for delivering health care in a way that is also equitable.

And so that means that this idea of equity needs to be taken up by everyone. And wherever you are in your work, whatever sector that you’re in, we need to have conversations about what tomorrow looks like. How do we work collaboratively, and how do we think from our own perspectives about what it looks like, just to put it boldly, a society that prioritizes human rights, that prioritizes wellness? So it’s a conversation that needs to happen, not just within health care but across society.

JOEL BERVELL: Absolutely. Dr. Cheryl Clark, thank you so much for being on The Dose. Thank you for sharing your wisdom, your passion, your research, and for being someone that’s pushing health care forward in the right direction. Thank you so much for being here.

CHERYL CLARK: Thank you so much for having me.

JOEL BERVELL: This episode of The Dose was produced by Jody Becker, Mickey Capper, and Bethanne Fox. Special thanks to Barry Scholl for editing, Jen Wilson and Rose Wong for art and design, and Paul Frame for web support. Our theme music is “Arizona Moon” by Blue Dot Sessions. If you want to check us out online, visit thedose.show. There, you’ll be able to learn more about today’s episode and explore other resources. That’s it for The Dose. I’m Joel Bervell, and thank you for listening.