Nadine J. Barrett, Ph.D., M.A., M.S., senior associate dean for community engagement and equity in research at the Wake Forest University School of Medicine and Atrium Health, has just started her term as president of the Association of Cancer Care Centers (ACCC). She recently sat down with Healthcare Innovation to discuss the theme for her 2024-2025 term: “Reimagining Community Engagement and Equity in Cancer.”
The ACCC is a community of more than 34,000 multidisciplinary practitioners and 1,700 cancer programs and practices nationwide.
A medical sociologist by training, Barrett is a health disparities researcher, equity strategist and a leader in facilitating community/stakeholder and academic partnerships to advance health equity and developing training and methods to address implicit bias and structural and systemic racism that limits diverse participation in clinical and translational research and access to quality healthcare.
Prior to her time at the Wake Forest School of Medicine, she served as co-director for Equity and Stakeholder Strategy at Duke’s Clinical and Translational Science Institute and founding director of the Duke Center for Equity in Research, leading Duke Health’s efforts to enhance trustworthiness in their healthcare and research. She was also founding director of and the Duke Cancer Institute’s Office of Health Equity.
HCI: Could you talk about the scope of the ACCC?
Barrett: When we look at academic health centers, they serve about 15 to 20 percent of all patients who have cancer in this country. The remaining 80 to 85 percent are actually served in community cancer centers across the country. So one of the things that’s really powerful about what we do at ACCC is we have academic health centers as members as well as community cancer centers, so we’re building those partnerships where we could potentially reach almost 100 percent of all patients who get diagnosed with cancer in the United States, which will be pretty powerful.
HCI: Your theme as the leader for this year is reimagining community engagement and equity in cancer. What does the data tell us about the current state of disparities in cancer outcomes for patients in the United States? Is it about access to preventive services? Longer wait times to treatments and access to clinical trials? Is it all of that?
Barrett: All of that. When we look at cancer outcomes, we see that underrepresented and minoritized populations tend to carry the greatest burden of disease so they’re more likely to have higher incidence and mortality of the disease, and least likely to be represented in clinical trials that could potentially be life-enhancing or life-saving.
These have been longstanding disparities. We have to think about the things that we can start doing to ensure that our systems, our organizations, have the best resources, information and best practices that they could implement at their local sites to be able to be more effective and engaged in their communities.
That means engaging with communities broadly, as well as engaging our own teams. We provide the resources and information to physician scientists, nurses, and social workers to start really reducing these disparities that we know exist. We want to make sure that we’re disseminating what we see as the best practices that people could do. We are also a convener. We have brought together research and community cancer centers to work diligently toward ensuring that we start asking research questions that are relevant. We’re doing work in Appalachia to really understand cancer disparities, and we’re getting ready to start a national partnership with the Association of American Cancer Institutes, which is the umbrella group for the academic cancer centers across the country. That will allow us to maximize that impact. We partner with ASCO, AACI, and many others to ensure that we are being true collaborators and ensuring that we’re getting the best information possible to our patients and our communities.
HCI: On your website I saw a description of an e-course about implementing shared decision-making in bladder cancer care. It talked about details from an economic study that found gaps in care for patients, and longer wait times in treatment for underrepresented communities. And patients diagnosed with later stage cancer paying more for care.
Barrett: Shared decision-making has been one of the heartbeats, if you will, of what we do. We see disparities in terms of the communications between provider and patients. People of color, particularly Latino and African American, are least likely to get a full engaging conversation with their providers about what is best for them compared to their white counterparts. Our goal, ultimately, is that all patients get that type of conversation. The same issue exists for rural areas as well. So for us, when we talk about the shared decision-making, where you live makes a difference in terms of the quality of that shared decision-making, to the extent it even happens.
If you’re talking about people who are marginalized or minoritized, the power dynamics between them and a provider automatically creates an idea that what the provider says is what you must do, right? So we’re trying to shift some of that so it’s actually a partnership, where as a partner, you guys talk about what is ultimately best for that patient and then the patient gets to make a decision with their family.
HCI: Outside of the equity issues, are there other topics that are really high on the agenda for AAAC this year?
Barrett: The workforce is a critical one. The importance of diversifying our workforce is critical. For example, one of the things that’s a little pet peeve of mine is that the NIH and FDA and other funding agencies, when they think about diversifying the workforce, they tend to focus on undergraduate and then graduate and medical school. And I think those are great and important. They also focus on HBCUs, and emphasize minority-serving institutions as well, which is great. But the group that they always tend to miss out on is community colleges. Interestingly enough, 70 percent of students who are in community colleges are from that community. So if you’re talking about community engagement and outreach, who better than the people who are from the community to engage with? Most of them are from underrepresented populations as well. Yet no one is creating a pathway for these students, so I really think if we want to be inclusive, we need to include community colleges in those discussions as well.
HCI: Anything else you are workin on at ACCC this year?
Barrett: We’re really focusing in on being trustworthy, and what that means when we talk about community engagement and equity in research. Trustworthiness makes us have to look internally. Health systems might say things like ‘They don’t trust us; that’s why they don’t follow through with their medications.’ And I say, ‘Well, how trustworthy have we been in terms of being a health system? In terms of providing the best care? in terms of doing the type of outreach and engagement that we need to do?’
So I’ve been doing some work in this space at Wake Forest. I did it at Duke as well, in terms of letting the community actually interpret research findings. Tell us what it means, tell us what the intervention should be, and tell us what we need to do differently as a health system to be more trustworthy. Community engagement is engaging the people we’re talking about in the work instead of just keep talking about them — asking them: what does this mean, and then how do we move forward to do better?
