Addressing Disparities Starts With Engaging 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 and professor of radiation oncology at the Vanderbilt-Ingram Cancer Center, kicked off the meeting by explaining the long relationship-building process that is community engagement and its importance in reducing disparities.

While Winkfield largely framed her comments on Black/White disparities because that’s the largest gap that continues to persist, she stressed that there are many others, such as those related to 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 diff erence between Black patients and White patients narrowing in terms of cancer mortality.¹

“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,” she stressed. 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 (SDOH) 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,” Winkfield declared. If someone is trying to make ends meet, perhaps working 2 jobs to get food on the table, they are likely not thinking about their health care. “These are structural barriers” and providers need to think about them, Winkfield said.

How do providers address SDOH? They need more research and advocacy. Descriptive research isn’t enough; some implementation science is necessary to understand what is working and how strategies can be adapted to diff erent communities, noted Winkfield and colleagues in a paper published in 2020.² In addition, the paper noted that there needs to be a diverse workforce and direct collaboration with communities and community-engaged researchers.

In early 2021, Winkfield published another paper that provided a framework to address disparities.³ 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. Participation rates for racial and ethnic minorities have been historically poor, even in diseases that are more likely to aff ect minorities. For instance, multiple myeloma has been one of the most rapidly evolving fi elds, with many trials for new therapies. But of the participants in clinical trials that are used to approve those drugs, only about 5% are 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?”

Geography is not all that matters; income does, too. One study looked at patient income level in cancer clinical trials and the results indicated that people who are poor usually 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?”

Winkfi eld was previously on the faculty at Wake Forest Baptist in North Carolina, which had a program to teach basic science researchers how to talk to community members. The researchers learned how to explain their research in a way lay individuals could understand, to get their input. As a result, 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,” Winkfield said. “You’re having conversations, building those relationships.”

Winkfield then shifted to moderate a panel on community engagement to address disparities. Participants were John D. Carpten, PhD, Department of Translational Genomics, Keck School of Medicine, 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 “Chris” Prakash, MD, an oncologist with Texas Oncology based in Paris, Texas, and a member of the American Society of Clinical Oncology Rural Task Force.

The panel continued the discussion on clinical trials. For smaller practices, getting patients into clinical trials can be challenging because they may lack resources, such as a research nurse. As a result, it’s not necessarily easy to bring clinical trials to areas where they are needed, so trial populations continue to see disparities based on economic status, 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 to whom you are providing care. A common refrain was “meeting the patient where they are.”

“Patient-centered care is really about the patient,” Jordan said. “And to [truly] carry that out you really do have to fi ll 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 research results show that Black men are not only aff ected more by prostate cancer, but they are screened less frequently. PCC conducted a program with churches in the area and brought providers in to meet with church members and help understand what could be improved to increase screenings. Telehealth has the potential to get care to more people, especially when some patients would otherwise have to drive 2 hours from rural areas to access cancer care, but a digital divide remains, Prakash and Oubre noted.

A quarter of Texans don’t have internet access, and PCC still treats patients with fl ip phones. At the beginning of the COVID-19 pandemic, telehealth was a lifeline, and it has since been made clear that telehealth has a role; 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 [experienced] in isolation,” Oubre 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 will 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 evaluated with genomic testing 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 SDOH impact a patient’s health, no good payment models address them, according to Oubre and Jordan.

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

Practices are made up of multiple communities and populations, and payment models don’t always take that into account adequately. Some models have been 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 lightning round discussing ways in which communities need to be engaged to change what is being seen with respect to disparities. Jordan noted that 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. Thirteen states still have not
expanded Medicaid, which is a cause for disparities across the country.

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

“An underlying inequality exists in this country between the haves and the have-nots, and that is at the crux of all these problems,” Carpten 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.”

References

1. Sengupta R, Honey K. AACR Cancer Disparities Progress Report 2020: achieving the bold vision of health equity for racial and ethnic minorities and other underserved populations. Cancer Epidemiol Biomarkers Prev. 2020;29(10):1843. doi:10.1158/1055-9965.EPI-20-0269

2. 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

3. 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