Addressing Disparities Starts With Engaging the Community

In the opening sessions at the Patient-Centered Oncology Care® conference, held September 23-24 both virtually and in Nashville, Tennessee, speakers focused on addressing disparities by getting involved and engaged with the community.

Community engagement is an important part of the process to address disparities in cancer care, explained speakers during the first day of Patient-Centered Oncology Care®, hosted by The American Journal of Managed Care® in Nashville, Tennessee, and virtually, September 23-24, 2021.

Karen Winkfield, MD, PhD, executive director of the Meharry-Vanderbilt Alliance, kicked off the meeting by explaining the long relationship-building process that is community engagement and the importance of it for reducing disparities. While Winkfield largely framed her comments on the Black/White disparities because that’s the largest gap that continues to persist, she stressed that there are many others, such as geography, age extremes, and sexual orientation.

In 2020, the American Association for Cancer Research published its first report on disparities in cancer, showing that while some gaps persist, progress has been made, with the difference between Black patients and White patients narrowing in terms of cancer mortality.

“We’re doing better, we’re curing cancer, right?” Winkfield said. “Hallelujah, we’re doing better!” But as people are living longer with cancer, they should also be living better. “We don’t just want them to survive it; we want them to survive it well.”

Focusing on just the outcomes may not be enough. Winkfield was interested in biological determinants in her early career, but she found out that the social determinants of health have a much bigger impact on patients. Those may sometimes seem intangible—access to care, sociocultural barriers, socioeconomic status—but they’re important, she said.

“We’ve got to meet people where they are,” she said.

If someone is trying to make ends meet, maybe they’re working 2 jobs to get food on the table, they are not thinking about their health care. “These are structural barriers” and providers need to think about them, Winkfield said.

How do providers address social determinants of health? They need more research and advocacy. Descriptive research isn’t enough; there needs to be some implementation science to understand what is working and how they can be adapted to different communities, Winkfield and colleagues wrote in a paper published in 2020.1 In addition, the paper notes that there needs to be a diverse workforce and direct collaboration with communities and community-engaged researchers.

At the beginning of 2021, Winkfield published another paper that provided a framework to address disparities.2 She and her coauthors convened a roundtable to share best practices and identify effective practices. They identified community engagement, patient navigation, and health care system changes as the issues that need to be addressed in order to deliver equitable cancer care.

Clinical trials are another area for improvement. They don’t have good participation of racial/ethnic minorities. For instance, multiple myeloma has been one of the fastest growing fields, but the clinical trials that are used to approve those drugs only include about 5% of Black patients even though 20% of the US population with multiple myeloma is Black.

“So, when we design the trials, are we getting the people who need the drugs?” Winkfield asked. “Where are the trials happening? Are they happening in the community or are we always going to those big institutions?”

Not only does geography matter, but so does income. One study looked at patient income level in cancer clinical trials and found people who are poor don’t participate in clinical trials.

“Well, yeah; we know that,” Winkfield said. “But how do we think about the community? How do we get the community voice? Can we figure out how to do clinical trials?”

When Winkfield was at Wake Forest Baptist, there was a program that taught basic science researchers how to talk to community members. This allows them to break down their research for lay individuals to get their input. The result is that advocates have the opportunity to understand basic science principles and researchers learn how to communicate with community members.

“Community engagement doesn’t mean you do it all. It means finding partners,” she said. “You’re having conversations, building those relationships.”

Winkfield then shifted to moderate a panel on community engagement to address disparities that included John D. Carpten, PhD, Department of Translational Genomics, Keck School of Medicine of University of Southern California; Kathy Oubre, MS, CEO of Pontchartrain Cancer Center (PCC) in Louisiana; Terrill Jordan, LLM, JD, president and CEO of Regional Cancer Care Associations in New Jersey, Maryland, and Connecticut; and Sucharu Prakash, MD, an oncologist with Texas Oncology.

The panel continued the discussion on clinical trials. For practices, getting patients into clinical trials can be challenging because they don’t have the resources, like a research nurse, available. As a result, there are challenges bringing clinical trials to populations where they are needed, so they continue to see disparities based on economic basis, location, and more.

However, with more and more ways to get clinical trials into the community, getting the community involved in trials is the next step. This comes from knowing your community and who you are providing care to. A common refrain was “meeting the patient where they are.”

“Patient-centered care is really about the patient,” Jordan said. “And to really carry that out you really do have to fill the gaps in your knowledge and your science. Without that, I don’t know how you can deliver patient-centered care. How can you deliver that which you have not studied?”

Oubre explained that the research shows that Black men are not only affected more by prostate cancer, but they are screened less. PCC conducted a program with churches in the area and brought providers in to meet with church members and help understand what could be done better to increase screenings.

Telehealth has been seen as a way to get care to more people, and it has that ability when some patients are driving 2 hours from rural areas to access cancer care, but there remains a digital divide, Prakash and Oubre noted.

One in 4 Texans doesn't have internet and PCC still treats patients with flip phones. At the beginning of the COVID-19 pandemic, telehealth was a lifeline, and it has since been made clear that there is a place for telehealth; however, Oubre doesn’t believe telehealth has a large place in oncology. She sees telehealth as a tool for nutrition and patient education sessions, as well as a way to involve families and caregivers.

“Cancer is not in isolation,” she said. “You’re talking to the patient and you need the whole family engaged.”

Disparities that occur in trials and in research can have a big impact, Prakash explained. Precision medicine is going to bring oncology to the next step of curing cancer and individualizing medicines, but research has shown that almost double the number of White patients have their tumors tested compared with Black patients.

The concept of precision medicine has consistently been “dumbed down” in a way to just the idea of performing a genetic assay, Carpten said. However, a broad definition of precision medicine includes lifestyle and environmental factors that have a significant impact on a patient.

Although all of these social determinants impact a patient’s health, there are no good payment models addressing social determinants of health, according to Oubre and Jordan.

“That’s been a gap,” Jordan said. “I don’t know that there’s going to be a payment model that actually addresses it appropriately.”

Practices are made up of multiple communities and populations and payment models don’t always take that into account adequately. There have been models that have tried, but they have been unsuccessful in Jordan’s eyes.

Oubre added that value-based care models, in general, have run into the challenge of not adequately accounting for different populations and communities. For instance, the Oncology Care Model has an end-of-life measure, but some practices may be largely serving populations and communities that do not believe in discussing end-of-life matters. These practices will not only do poorly on that measure, but perhaps poorly in the model as a whole.

Winkfield closed out the panel discussion with a lightening round in which communities need to be engaged to change what is being seen with respect to disparities. Jordan noted patients and their caregivers need to be better involved. Oubre highlighted payers and policy makers, but added that they can’t design models in isolation without talking to practices; otherwise they’ll fail.

Prakash said big pharma needs to be better engaged for biomarkers and targeted therapies, as well as the government. There are still 13 states that have not expanded Medicaid, which is a cause for disparities across the country.

Finally, Carpten pointed to the American people as a whole.

“There is an underlying inequality in this country where there are the haves and the have-nots, and that is at the crux of all these problems,” he said. “We can sequence, we can create drugs, we can do everything we want, but if everyone doesn’t have equal access to it, we will always have these disparities.”


1. Silker ML, Deville Jr C, Suneja G, Winkfield K. Lessons from COVID-19: addressing health equity in cancer care. Int J Radiat Oncol Biol Phys. 2020;108(2):475-478. doi:10.1016/j.ijrobp.2020.06.042

2. Winkfield KM, Regnante JT, Miller-Sonet E, Gonzalez ET, Freund KM, Doykos PM. Development of an actionable framework to address cancer care disparities in medically underserved populations in the United States: expert roundtable recommendations. JCO Oncol Pract. 2021;17(3):e278-e293. doi:10.1200/OP.20.00630