Article 9: Consuelo Hopkins Wilkins

Our Narratives of Discovery articles have profiled individual scientists on their expeditions to discover new knowledge. All of them have unveiled new appreciations of where knowledge comes from, both in epistemological and aesthetic terms. This Narrative of Discovery asks those and even more fundamental questions. During my interviewing of Dr. Consuelo Wilkins, I zeroed in on what it took for her to create and execute her all-consuming commitment to health equity and social justice in health.

              Consuelo H. Wilkins, MD, MSCI is the co-director of Clinical and Translational Research (CTSA) at Vanderbilt University in Nashville, TN. Together with multiple and intersecting circles of collaborators in and beyond Nashville, she has created a living organism of commitment to equity and health equity. I need a systems-science-like display of amplifying and overlapping forces to display the breadth and internal complexity of this world. Wilkins opens clinical and translational sciences to those for whom it is performed. With the fundamental conviction that the patients we serve are our leaders, she has evolved an apeirogon—a polygon with an infinite number of sides—that plugs the science into its community to power its raison-d’être.

Dr. Wilkins is Senior Vice President and Senior Associate Dean for Health Equity and Inclusive Excellence and Professor of Medicine at Vanderbilt University Medical Center (VUMC). She brings to the CTSA igniting experience in community engagement, inclusion of patients in scientific decision-making, and national leadership to increase the ranks of minoritized persons in clinical trials. As the PI of the Vanderbilt Recruitment Innovation Center and the second Executive Director of the Vanderbilt-Miami-Meharry Center for Excellence in Precision Medicine and Population Health (she served from 2012 until she stepped down in 2020), Wilkins convenes multiple work groups, core resources, and task forces that together have pushed Vanderbilt to a leadership position in patient authority in health care. Funded by NIH, NIH/NCATS, other federal agencies including PCORI, and private foundations, these centers have been embedded within Vanderbilt with both independence and cross-collaboration with other units of the university. 

The Wilkins Health Equity and Engagement Lab (WHEEL) gathers patients, community activists, bioscientists, and anti-racism leaders together into a muscular system that has already succeeded in improving health equity at Vanderbilt and beyond. Under three banners—Participants as Partners, Community Engaged Research, and Precision Medicine and Health Disparities—the Lab runs eight separate projects and national collaboratives to empower community engaged research, increase minoritized participation in human research trials, protect genetic privacy, and amplify national partnerships toward these goals. As a member of the National Academies and the Director of the Engagement Core of NIH’s All of Us, Wilkins has a high-altitude directorial perspective that intensifies her zip-code-level participation in the work of community engagement.

Wilkins’s recent publications include reports of equity in clinical care and research in heart disease,[1] breast cancer,[2] chronic pain and opioid use in veterans, dementia, asthma, anti-psychotic agents, and phenome-wide race disparities in disease risk.[3] Accompanying disease-specific research are conceptual and systemic examinations of what Wilkins calls “the cross-cutting piece” of equity and health equity. Wilkins Lab teams have created authoritative foundations of research and conceptual work in trust and mistrust of medicine,[4] community-engaged research,[5] diversity in clinical trials,[6] universal screening of social determinants of health,[7] and patient-centered and equitable research design.[8]

I asked Dr. Wilkins to tell me about the beginnings of her work. I quote from the verbatim interview transcript:

CW: When I started my career, I was really just trying to solve a problem that I identified. I saw that Black women were being admitted to the hospital  with hip fractures, and they weren't being treated the same way that White women were. They came in, they had their hip fracture repaired, but they went home without calcium, vitamin D, and bisphosphonates And, you know, this was early in my career. I was in medicine residency and bisphosphonates were relatively new. These women were not getting the same treatment. And so I went to the literature to try and pull the evidence to convince people that this is wrong, this is inappropriate. I realized that the evidence actually didn't exist.

Much later in our conversation, Consuelo revealed that she had been an intern when she recognized the racial discrepancy in hip fracture treatment. Having just graduated from medical school at Howard University in 1996, she saw something that others overlooked. As a Black woman student at Howard, she had developed the critical tools to recognize and expose racism in medicine. If only all medical schools could endow their students with racial and class awareness in the required curriculum.

Starting with her internship discovery about race discrepancies in osteoporosis, Wilkins realized that the evidence did not exist to answer her questions about racial or class disadvantages for patients. She needed to develop the research skills to collect that evidence herself. This would give her the means to engage with the populations she wanted to serve.

CW: Every step of the way, I realized I needed to create new pathways, processes, strategies that didn’t exist. We need more structure; we need more infrastructure.  Other people started asking me for help. They wanted, they needed support. They needed to know how to do it. I was really still just trying to do it for myself. . . .Early on in my career, I was hearing people, on both shoulders behind, everywhere I walked, “You can't do that. You'll  ruin your career. You'll never have a career if you are spread so broadly.” . . . . [It was] something that traditionally in clinical and translational science was not only not rewarded or valued but was strongly discouraged. We get to do this work now, and, and it's more respected and it's better funded. The wide span of work [is]really reflective of the area of health equity being cross-cutting. What they were failing to see [early on] was this cross-cutting piece.

Underlying the early disdain for Wilkins’s work in community engagement hid far more foundational prejudices:

RC: What you were up against was not individual barriers, but the hierarchy. The status hierarchy of who gets to be a PI.

CW: Not just who gets to be a PI, but what gets to be considered science. This approach that focused on marginalized and minoritized populations was also outside of what people are typically seeing and thinking about. How do we actually engage, learn from, and bring in these groups in ways that are meaningful again and not forcing us to compare them to a group of white people. [How can we] not recognize some of the social and structural factors that influence their lives and health?

The driving force of her productivity is her conviction that the problems of racial inequity in health care require attention to multiple factors at once. Social, cultural, historical, psychological, economic, clinical factors ALL have to be held in view at once were one to comprehend the phenomenon of racism in health care. For Wilkins, the cross-cutting principle of health equity becomes the ATP of health care. Health equity is the necessary energy source for effective clinical care, knowledge production, and treatment of patients, clinicians, and institutions. Without it, the enterprise itself is tainted:

RC: It’s like the biologist who recognizes the molecule that’s kicking [everything] off. There is a central thing that can be turned on, and you found it turned off.

CW: Right.

RC: You’re trying to turn it on. It’s that fundamental.

CW: You're giving an example at the molecular level, which a lot of people, especially of course in science and medicine, can follow easily. It doesn't seem messy. But this work that we're talking about requires you to think about context and social drivers of health and populations that have been racialized and marginalized. They're not gels and mice. They're people with lives and complexities.

RC: They’re not replicable.

CW: Exactly.

RC: They’re not reducible.

CW: [They’re not] reducible .

Once looked upon as “charity work,” community engagement ignited a challenge for Wilkins. How could effective care proceed without knowing for whom you are caring? She traces mainstream recognition of her work in health disparities and health equity, in large part, to biomedical funders’ realization of the need for patient engagement. The CDC published the Principles of Community Engagement in 1997, with NIH support, to require community engagement and learning from communities of patients in clinical and translational research.[9] PCORI specifically grants funding to investigators who put patient engagement at center stage of their work.

CW: Community engagement became really a critical approach and strategy to my work. The CTSAs came along as I started to talk about community engagement and engaging populations and learning from them what I was doing wrong. Shortly afterwards, PCORI then required [patient] engagement. Those were really pivotal decisions by funders. . . . This different approach was outside of the public health space. We were [now] talking about clinical and translational science.

Wilkins emphasized in our conversation that community engaged research isn’t new. CBPR can be traced back to the 1940s and 50s. What’s new is that community engaged research and community engagement are now present within biomedical research and clinical and translation science, in part as a result of CTSA’s efforts.

Western health care bifurcates the individual patient into seemingly opposing dimensions. The patient’s singular self—their language, lived experience, culture, history, social mores, familial practices, faith, and tastes—declare where they locate themselves, what matters to them, and whom they number among their entourage. The singular self pronounces their identity positions—including race/ethnic identity, class, gender identity and sexual orientation, ability, and zip code. In contrast, their biological presence in the operational gaze of the medical establishment typically shrinks to a particular organ system or disorder. Wilkins implies that we need stereoscopes to overlay both pictures onto one coherent dimensional image. She entreats us to take the singular into account in every step of bioscience’s knowledge production and use. Beyond health care, her unstated allies in this quest for stereoscopic vision might be found among philosophers who study ontology and subjectivity,[10] literary scholars who study autobiography and memoir,[11] and Black Studies theorists who examine the historical sources of Black identity.[12]

Wilkins and an esteemed group of co-authors published a statement in 2022 in the New England Journal of Medicine calling for established health equity parameters in all clinical and translational science.[13]

They proposed four goals for researchers:

1. Transform the ranks of institutional research, leadership, faculty, trainees, and staff to reflect the demographic diversity of the communities their organizations serve.
2. Fund health, equity and community oriented research at parity with biomedical research.
3. Build community capacity for research and improve public understanding and trust in science by means of shared investment in research.
4. Ensure that enrollment for all clinical trials reflects the demographic diversity of people with the health conditions under study.

Readers of the statement, including colleagues in CTSAs, agreed on principle with all four goals while coming to grips with what such a commitment would require:

CW: They endorsed them, and they think that we should be doing them. But [will they act] when it comes time to put some resources towards those things or advocate for people from marginalized groups to be in roles of leadership and build the community capacity. There has to be some bolus of funding that goes into health equity and some accountability for meeting recruitment goals.

The vision enacted in these four goals is activating, and even stating the goals matters. Questions emerge at the point of implementation. How does a health center define “the community it serves”? Is parity of funding for health equity with bioscientific research achievable? The singularities of all involved in these proposed changes influence the stage of implementation. Principal Investigators and university leadership share high levels of educational achievement and social positions of some authority within prestigious institutions, influencing their collective interpretive schemata for making programmatic decisions. Minoritized members of the communities of academic medical centers may, in contrast, carry into these same decisions cultural memories of reparations and acres promised and never delivered or a history of broken treaties. As a microcosm of the overarching issue under study, the partners in community engagement agreements are enacting the complex differences that underlie the very situation that they are trying to redress.

The four goals proposed by Boulware et al address not only the conduct of research that includes community members. It calls for faculty and staff diversity to match the diversity in the communities they serve and expects that engaging community members in research will improve their understanding of and trust in medicine and medical institutions. I asked Wilkins how such vast and seemingly separate goals could all be written into one covenant.

CW: Well, Rita, I think I would probably make it all fit, because at the translation, at the early earliest translational steps, if we don't have diversity of thought on the teams and people with different lived experiences, then we're starting out with a more myopic viewpoint there. If we're not thinking also in advance of when this gets to clinical trials and eventually practice, [how will we know] how it might need to look differently? Are we considering all of the contextual and social and structural factors that will eventually play a role? I think it's critical that we start to think about the endpoint when we're doing this work.  I would say the clinical trial standpoint is probably more challenging [than] at the basic science level. But if we're really talking about translational, we're talking about moving into some human benefit. And so I think it's important to start with all of those things early.

      As Consuelo thinks about what will be needed to achieve faculty diversity to match the communities they serve, she surveys current efforts to support minoritized students and junior faculty:

CW: People need some mentoring, but that's not all they need, and that's not the most important thing they need. They need a fair chance. They need to be appropriately assessed [without bias]. They need to be considered in light of the structural barriers and the racism and the oppression and the atrocities [and systems] that [they] have been embedded in. They need to know what the rules are. They need to know those unspoken rules and practices. . . . I don't want to be resilient. I want to be in a system where I'm not being oppressed, where there are not barriers being constantly put in front of me. I want everybody to have that opportunity. And to realize the collective benefit that we all get when we have these opportunities for everyone.

She sees what Elle Lett et al called “health equity tourism” on the horizon, where persons without the lived experience of racism or exclusion are being funded to do this work.[14] It may be a sign of progress that investigators put health equity and racial justice into their grant applications because the funders expect it, but it may also be an instance where unqualified persons are trying to accomplish complex work beyond their capacities, effectively diverting funds away from highly-qualified health equity researchers whose innovative approaches are not fairly evaluated.

Consuelo Wilkins’s achievements mark her as an indomitable leader. Her trajectory toward authority and prominence is marked by interpersonal magnetism, multi-disciplinary research and scholarly skills, success in achieving funding, savvy insight into organizational structures, and the inadmissibility of failure. She exudes tremendous leadership skills in motivating groups, generating institutional and national collaborative action, and managing change.  The sharpness of her vision almost guarantees her achieving her goals, for seeing through her eyes commits the seer to her ideals of equity. Let us all see through her eyes.