Initiatives aim to improve racial, ethnic diversity ‘across entire cancer care continuum’
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Cancer centers, advocacy groups and other organizations have ramped up efforts to reduce disparities across the cancer care continuum, according to presenters at the virtual National Comprehensive Cancer Network 2022 Annual Conference.
“Despite Black individuals having higher incidence and/or mortality compared with white individuals in the U.S. for the most common cancer types — and despite cancer being the No. 1 cause of death for Hispanics in the U.S. — Blacks and Hispanics made up only 4% each of [participants in clinical trials] in 2018 that led to FDA drug approvals,” Maria Garcia-Jimenez, MD, MHS, researcher at UCLA Jonsson Comprehensive Cancer Center, said during her presentation.
Garcia-Jimenez added that last year, racial and ethnic minorities represented only about 15% of all clinical trial participants, despite making up 40% of the overall U.S. population.
“Clinical trials in oncology are crucial to advancing patient knowledge, improving patient outcomes and giving patients access to the most novel therapies available,” she said. “Having disparities represented in clinical trials will only further widen inequities in cancer care and cancer outcomes.”
Targeting barriers at four levels
Garcia-Jimenez discussed ongoing UCLA Jonsson Comprehensive Cancer Center initiatives to address disparities in cancer clinical trial participation.
She cited barriers at the:
- health system level, such as geographic location of trials, lack of research resources in community clinics, stringent eligibility criteria and insurance status;
- provider level, including lack of awareness among providers, barriers of time and cost, bias and practice patterns;
- community level, such as lack of trust and lack of engagement with communities and organizations by academic centers and cancer centers; and
- patient level, including lack of trust among historically underrepresented patient groups, language and cultural differences, lack of awareness among the underrepresented in terms of what clinical trials are and how they can play a role in their care, and social determinants of health.
“We are putting forth efforts at our institution to address some of these barriers at all four levels,” Garcia-Jimenez said.
The center, which has operated an oncology clinical trials network for several years, has been seeking ways to bring clinical trials to more diverse communities through partnerships and to improve infrastructure at UCLA community clinic sites to increase research resources. The goal, she said, is to “change the way we think about our internal scientific review process for clinical trials and clinical trials research so that it becomes an expectation and a standard that across all clinical trials, we are looking at diversity as defining good science.”
On a larger scale, the center has partnered with the 377-bed Olive View-UCLA Medical Center to bring clinical trials to that setting.
“The center sees about 2,000 cancer patients annually, with 61% of these patients being Hispanic and the majority of them are limited in English proficiency and are also underinsured,” Garcia-Jimenez said.
To date, five clinical trials are open at the center, she said.
“Additionally, we have made concerted efforts to put in place an onsite medical oncologist, a clinical trialist and two clinical trial coordinators and, eventually, a clinical trial navigator who will be bilingual and be able to increase awareness and opportunities of clinical trial opportunities, but also incorporate clinical trials research into the culture of the care that is offered for oncology patients at that community center,” she said.
Other initiatives currently in the pilot phase aim to address barriers at community, provider and patient levels.
“One initiative, the Clinical Trials Community Advisory Committee, will virtually address community-level and provider-level barriers and is aimed at increasing engagement and partnerships with communities to begin building trustworthiness and to also promote equity mindedness and increased awareness of barriers racial/ethnic minority patients face to participate in clinical trials,” she said.
Elevating Cancer Equity Initiative
NCCN seeks to move from conversation to action in addressing cancer care disparities through an initiative it launched with American Cancer Society Cancer Action Network (ACS CAN) and National Minority Quality Forum (NMQF).
Alyssa Schatz, MSW, senior director of policy and patient advocacy at NCCN, described the Elevating Cancer Equity Initiative during her presentation.
The efforts of a working group tasked with developing actionable policy and practice change recommendations as part of the initiative resulted in the creation of two major frameworks.
“The first was a framework for practice change, the Health Equity Report Card, which is intended to be a tool for providers, payers and accreditation entities working to advance racially equitable practices in cancer care,” Schatz said. “It includes four domains, each of which will receive its own grade and include community engagement, accessibility of care and social determinants of health, addressing bias in care delivery and quality and comprehensiveness of care.”
NCCN will pilot the Health Equity Report Card with five volunteer member institutions, according to Schatz.
“We developed an implementation plan for the report card with feedback from providers on feasibility and sources of evidence to use for measurement,” she said. “We also hope to adjust and pilot the report card in community settings so that it will be translatable. And since we want this to be translatable to policy and practice and to be able to be brought to scale, we are already engaging with relevant entities including [Center for Medicare and Medicaid Innovation] to make them aware of this work.”
Real change is only possible with structural systems change, Schatz added, which was the focus of the second framework.
“The working group developed 16 policy-change recommendations targeted to Congress, federal agencies, payers and state governments,” she said. “These recommendations intend to address systemic barriers across the entire cancer care continuum, including clinical trial diversity, workforce diversity, early detection and prevention, cultural and linguistic appropriateness of care and, importantly, patient navigation.”
Looking ahead
Improving cancer clinical trial access and participation among all groups requires investment in community partnerships and trustworthiness, Garcia-Jimenez said.
“Ultimately, it will require a culture change at the provider level and the cancer center level where we think about how we approach cancer research and clinical trial design,” she added. “We are approaching this with a patient-centered mindset and equity in mind where every human being counts.”
Much work still needs to be done, and many organizations and individuals are engaging in these efforts, Schatz said.
“We are continuing our partnership with ACS CAN and NMQF to convene a broad and inclusive group of stakeholders to address equitable systems change in cancer care and the coalition to start will be focused on advocacy for policy change at the federal level,” Schatz said. “Today, there are a number of policy proposals in existence that aim to address these disparities, and there is good momentum to work from.
“Although we have a long way to go, the good news is it is exciting and heartening to see this interest in measuring, understanding and then incentivizing equitable care outcomes is something that does currently have momentum in the policy landscape,” Schatz said.
For more information:
Maria Garcia-Jimenez, MD, MHS, can be reached at mgarciajimenez@mednet.ucla.edu.
Alyssa Schatz, MSW, can be reached at schatz@nccn.org.
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Garcia-Jimenez M and Schatz A. Presented at: NCCN 2022 Annual Meeting (virtual meeting); March 30 to April 1, 2022.
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