May 03, 2021
By Geraldine Carroll, ASCO Publishing
The COVID-19 pandemic and its disproportionate impact on communities of color and other vulnerable populations exposed inequities in health care and heightened the urgency to address disparities in cancer care. A new, actionable framework published in JCO Oncology Practice (JCO OP) is poised to serve as a toolkit to bolster health care as well as navigator and community stakeholder efforts that are dedicated to patient and community engagement, research, and education in medically underserved communities across the United States.1 The framework was made available as an open access publication to expand its reach.
“While originally the impetus for the paper was cancer health equity, the current COVID-19 pandemic highlights the need for this work across all areas of health and health care,” said lead author Karen M. Winkfield, MD, PhD, a radiation oncologist and executive director of the Meharry-Vanderbilt Alliance.
The framework was developed following a robust environmental scan to identify strategies and experts with a track record of providing successful community and patient-centric standards in accordance with the Institute of Medicine/National Academy of Science (IOM/NAS) to medically underserved cancer populations.
A roundtable working group of 33 experts was made up of patient advocates, industry leaders, and diversity and inclusion experts in cancer centers. It set out to determine effective approaches and policies along the IOM/NAS cancer continuum of care to help local health care providers, health systems, researchers, care partners, and community leaders facilitate and deliver optimal care for medically underserved populations. Surveys completed by the experts established areas of priority focus, including coordination of care or patient navigation, community engagement, and health care system changes.
“Most of the time when people talk about health disparities, they are thinking a lot about racial and ethnic groups, which I think is incredibly important,” Dr. Winkfield said. “But the recommendations as expressed by the final framework are actually applicable to many medically underserved communities… low socioeconomic status populations, rural populations, racial and ethnic minority populations of course are in there, but it is important to consider sub-groups and intersectionality including LGBTQ+ communities, immigrant populations, and Asian populations.”
Identifying Barriers to Cancer Care
The expert roundtable identified access and treatment barriers within and between four domains: screening, diagnosis, treatment, and survivorship. Lack of coordination and the logistics of multiple patient visits, navigating different providers and testing, particularly related to transitions in care, were identified as common barriers to care.
Financial barriers were also identified, which highlights the difficulty in addressing and documenting social determinants of health. “We need to make sure that those sorts of data points actually get included into the electronic medical record and communicated to different providers along the cancer continuum,” Dr. Winkfield noted.
There were also barriers thrown up by diverse languages spoken in the community or institutional settings that required multilingual navigators. Dr. Winkfield said the COVID-19 pandemic has forced health providers and policymakers to address issues that the cancer care community has grappled with for years.
“Think about the fact that the Spanish-speaking population has some of the highest levels of COVID-19 infection, so what is the communication strategy when you have diverse languages that are spoken in communities?” she said. “When you think about the geographic and social isolation, we’ve been hearing about how there are issues about getting the vaccine to individuals who are in rural areas; these are things we have been dealing with from the cancer care perspective for a very long time.”
The framework offers real-world strategies that will help patients with cancer have access to resources that can address financial and other social support needs such transportation, childcare, elder care, emotional support, and employment demands.
Jeanne Regnante, chief health equity and diversity officer at the LUNGevity Foundation and a co-author of the framework, is hopeful that stakeholders in cancer care will greatly benefit from the new approach.
“I always say that one person can do anything, but many people can do everything,” she said. “This framework gave us, the LUNGevity Foundation team, clear choices to develop a strategy focused on health equity. We are actively developing a library of health literate, culturally sensitive, and linguistically appropriate educational material with experts in the field, including patients and health literacy experts."
She added that LUNGevity has partnered with a network of community-based outreach leaders associated with groups in the community that are likely to include patients who are high-risk for lung cancer. “This partnership strategy is critical for engaging vulnerable communities with the Foundation in a trusted manner moving forward,” she said.
The expertise garnered in the framework focused on high-prevalence cancers that are predominant in the communities impacted by health inequity in the U.S., and co-morbidities were taken into consideration as well.
The framework also addresses workforce diversity, an area that has been a focus of Dr. Winkfield’s work for years and that she said is “near and dear to my heart.”
“When we look at the oncology workforce, only 3% are Black, only 4% are Latinx. In this country, where by the year 2040 [or] 2050, there’s an expectation that we’ll be a majority minority country, how are we keeping pace?” she wondered.
Dr. Winkfield stressed that the U.S. is not keeping pace with the changing demographics and diversifying the health workforce needs to extend beyond the physician workforce.
“There’s research to show that patients actually feel better heard by individuals who come from a similar background and they have better experiences as part of their care, but it can’t just be physicians—institutions, private practices, programs that take care of patients with cancer need to also think about the other members of their care team, so we’re talking about nurses, radiation therapists, medical assistants,” Dr. Winkfield said. Her message is clear: Institutions need to do more to build a workforce that looks like the communities they serve.
- Winkfield KM, Regnante JM, Miller-Sonet E, et al. 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 Jan 18:OP2000630.