Recommendations seek to reduce racial bias in cancer care
The National Comprehensive Cancer Network, American Cancer Society Cancer Action Network and National Minority Quality Forum have released a series of recommendations aimed at improving equity in cancer care.
The recommendations — the result of work by 17 national experts representing providers, patients, advocates, caregivers, researchers and industry — will be explained in a keynote address March 19 at the NCCN Virtual 2021 Annual Conference. They target a health care system that has failed members of Black, Latinx and Native American communities, among other underrepresented groups, according to Robert W. Carlson, MD, CEO of NCCN.
The Elevating Cancer Equity Working Group developed the recommendations after reviewing results of online surveys conducted by Public Opinion Strategies on behalf of the three health and cancer advocacy groups.
The survey results showed 63% of Black and 67% of Latinx patients, caregivers and survivors reported a negative experience with their oncology team, compared with 43% of white respondents. Additionally, 62% of oncologists themselves reported “nonwhite” patients with cancer were more likely than white patients with cancer to receive poor-quality care.
To address these disparities in cancer care, the working group created an Equity Report Card that includes 17 measurable practice changes. These include having health systems provide and require annual implicit bias training for all employees and offer culturally and linguistically representative patient navigators or community health workers.
Healio spoke with Carlson about the collaborative effort, the survey results and the steps necessary to put the recommendations into practice.
Healio: Can you describe the rationale for the recommendations?
Carlson: Multiple studies have demonstrated that people of color in the U.S. have worse outcomes of cancer and cancer care than do white people. There’s no biological basis for that. Rather, it’s the health care system and society overall failing people of color. The societal events of the last year, including the George Floyd killing and others that unfolded similarly, overlayed upon the ethnic and racial disparities of the COVID-19 pandemic and the outcomes of that. It brought us, as oncologists, to relook at our role in this. Do we have a problem in our own house? We started looking at that objectively, and we do.
Healio: How is the medical system failing members of historically underrepresented groups in the U.S.?
Carlson: Access to care is an issue. Many have inadequate or no insurance options. We know that care consistent with high-quality clinical practice guidelines, like the NCCN Guidelines, improves outcomes. People of color are less likely to get guideline-concordant care. However, when people of color get guideline-concordant care, the disparities in outcomes are greatly decreased or eliminated when compared with white people.
We also know that there is conscious and unconscious bias and discrimination in the health care system that alters the experience and outcomes of care for people of color. Black, Latinx and Indigenous people are greatly underrepresented as providers of health care, especially in oncology. That impacts the experience of people of color negatively. So, there are many, many ways we’re failing people of color.
Healio: What would you consider to be the root causes?
Carlson: Many of the root causes are related to social determinants of health, many of which result directly or indirectly from systematic or systemic racism embedded in our society. The root causes impact insurance, access to care and quality care, and the ability to participate in shared-decision making. Fundamental barriers exist to some degree in almost all aspects of cancer care for people of color.
Healio: Did you find it difficult to process the survey results?
Carlson: Absolutely. The negative experiences with oncology care that were reported by Black and Latinx patients are discouraging, disappointing, painful and I think not surprising, unfortunately. Black and Latinx patients are cared for in a system that, again, has few health care professionals of color. And today there are limited shared experiences across racial and ethnic groups. So meaningful, human interactions and relationships become much more challenging to develop. In that sort of setting, it’s not surprising that there are bad experiences.
Healio: How do you interpret the finding that most oncologists report racial bias is happening “often?”
Carlson: The fact that oncologists themselves report racial bias happening is both concerning and reassuring. The good is that racial bias is being recognized, and that gives us direction and opportunity to work to eliminate the bias. The bad is that exists at all. It should simply not exist.
Healio: Which recommendations do you believe to be critical?
Carlson: There are two main groups of recommendations. The first centers on the Equity Report Card, which is intended to help payers, accreditation entities and institutions themselves evaluate, rate and ultimately improve their practices and policies in relation to racial equity in cancer care. The second focuses on governmental and public policy changes. I don’t think we can separate them, unfortunately, because if the government and public policy doesn’t change, many of the resources needed to impact the metrics of the equity report won’t be available. And without an Equity Report Card, it would be difficult to identify best practices and how to minimize bias and disparities, and that’s what makes the whole process of change so difficult.
Healio: What needs to happen to make these recommendations a reality?
Carlson: It’s certainly going to have to extend beyond health care. But I think to move within oncology specifically, and within society generally, it’s going to take hard work, dedication, strong will, resiliency, uniting leadership, resources and transparency — all directed at fundamental change in the many different institutions of our society. It’s so crucial to the health of our society and fundamental respect for other human beings that we have to address it.
Healio: Is there anything else you would like to add?
Carlson: The 17 wonderful experts that we had on the working group all came to the table, worked hard and brought a special area of expertise or experience with them. Without their dedication and total commitment to this effort, we never would have gotten beyond square one.
For more information:
Robert W. Carlson, MD, can be reached at National Comprehensive Cancer Network, 3025 Chemical Road, Suite 100, Plymouth Meeting, PA 19462; email: firstname.lastname@example.org.
Members of the Elevating Cancer Equity Working Group include co-chairs Shonta Chambers, MSW, of Patient Advocate Foundation and Robert Winn, MD, of VCU Massey Cancer Center; Zeke Aguilera, ACT Lead of American Cancer Society Cancer Action Network (ACS CAN); Nadine Barrett, PhD, of Duke University School of Medicine; Linda Burhansstipanov, DrPH, MSPH, of Native American Cancer Research Corporation; Christina Chapman, MD, MS, of Michigan Medicine; Moon Chen, MPH, PhD, of UC Davis Health; Thomas Farrington, of Prostate Health Education Network; Carmen Guerra, MD, MSCE, of Penn Abramson Cancer Center; Chanita Hughes-Halbert, PhD, of Medical University of South Carolina; Marjorie Kagawa Singer, PhD, of UCLA Fielding School of Public Health; Mel Mann, MBA MEd, a patient advocate; Regina Martinez, volunteer for ACS CAN; Kris Rhodes, MPH, (Anishinaabe), retired founding CEO of American Indian Cancer Foundation; Brian Rivers, PhD, MPH, of Cancer Health Equity Institute at Morehouse School of Medicine; Gerren Wilson, PharmD, of Genentech; and Karen Winkfield, MD, PhD, of Meharry-Vanderbilt Alliance.