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Establishing a Health Equity Report Card to Eradicate Disparities in Cancer Care

A Conversation With Robert A. Winn, MD


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Although enormous progress over the past 50 years in every aspect of cancer care, including prevention, screening, chemotherapy, targeted therapy, surgery, radiation therapy, and supportive care, has resulted in increases in lives saved—from 3 million in 1971 to 16.9 million in 2019—the burden of cancer is still substantially greater for racial and ethnic minority populations.1 According to a report by the American Cancer Society, collectively, Black Americans have the highest death rate and shortest survival of any racial/ethnic group in the United States for most cancers. Black men also have the highest cancer incidence rate.2

The reasons for cancer health disparities in this patient population are many, including the cumulative effects of centuries-long policies that restrict housing, educational, and employment opportunities. These policies have led to reduced access to health insurance, preventive health services, and quality health care, especially in low-income neighborhoods and rural communities.1


“We are just scratching the surface of getting an understanding of how your zip code and neighborhood impacts cancer onset and outcome.”
— Robert A. Winn, MD

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A person’s zip code may not only affect his or her access to high-quality cancer care, clinical trials, and preventive interventions, it may change that person’s biology as well, making the individual more susceptible to the development of cancer, argues Robert A. Winn, MD. Dr. Winn is Director and Lipman Chair in Oncology of the Virginia Commonwealth University (VCU) Massey Cancer Center; and Senior Associate Dean for Cancer Innovation and Professor of Pulmonary Disease and Critical Care Medicine at VCU School of Medicine.

“We are just scratching the surface of getting an understanding of how your zip code and neighborhood impacts cancer onset and outcome,” said Dr. Winn. “We know there are greater rates of obesity across the United States and certainly in areas of color. How much of that is associated with zip code and neighborhood and the accessibility of places to exercise or get healthy food? Probably a lot. And how does obesity and stress, and the chronic inflammation they cause, impact DNA and outcome biology? We are not even at the tip of the iceberg of being able to understand how these things are all interrelated and how they impact the reduced life expectancy and poorer health outcomes, particularly of minority patients in the United States.”

Reducing Bias in Cancer Care

Compounding these impediments to high-quality care and improved outcomes is the implicit and explicit bias in care delivery, studies have showed. According to a national survey by the National Comprehensive Cancer Network (NCCN), American Cancer Society Action Network (ACS CAN), and National Minority Quality Forum (NMQF), significant majorities of Black (63%) and Hispanic (67%) patients with cancer and their caregivers believe racial bias is occurring today in cancer care,3 and many oncologists agree.

According to the survey results, majorities of oncologists report racial bias is happening “often” in the health-care system. More than 4 in 10 oncologists said it is possible that they have unintentionally had racial bias in treating patients of different racial or ethnic backgrounds; and more than 6 in 10 oncologists agreed with the premise that non-White patients are more likely to receive poor quality care than their White counterparts. In fact, in response to the question, “Generally speaking, how often do you think our health-care system treats people unfairly based on what their race or ethnic background is?” more oncologists, 54% than patients, 47%, agreed it was “often.”3

In a separate survey of oncologists and hematologists investigating oncologists’ perceptions of the impact of the social determinants of health on their patients and their opinions of how these effects could be remedied, most respondents reported talking with their patients often, 51%, or all the time, 18%, about how social determinants of health affected their care. However, most respondents, 81%, also agreed that they and their staff have limited time to spend assisting patients with social needs, and 76% said that assistance programs were not readily accessible.4

In a wide-ranging interview with The ASCO Post, Dr. Winn, Co-Chair of the NCCN, ACS CAN, NMQF Elevating Cancer Equity Working Group, addressed the issue of implicit and explicit bias in oncology; how zip code, the social determinants of health, and climate change are affecting cancer development and outcomes; and the need for a health equity report card to measure disparities in cancer care and institute solutions to improve care.

Addressing Cancer Care Disparity

The surveys conducted by NCCN, ACS CAN, and NMQF of patients and oncologists on their perceived racial disparities in cancer care found that most oncologists agreed that non-White patients are more likely to receive poorer quality care than White patients.3 If oncologists are aware of the problem, why isn’t more being done to remedy the situation?

That is the question we need answered. Now that we know this is a problem, how do we address and solve it? Having this information is fascinating, but the real work and, for me, the real excitement, is the opportunity this gives us to come up with approaches on how to address cancer disparity. Now that these data are published, we must make sure that throughout all of our professional bodies and within both academic and community cancer centers, there is recognition that we have a problem of conscious and unconscious bias and discrimination in the health-care system, which alters the care experience of minority patients.

Most of the folks who have this perception are probably looking for clinical guidance in improving equity in cancer care. We know there is a relationship between socioeconomic status and the likelihood of receiving NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)–concordant care, and that patients receiving care that is not concordant with NCCN Guidelines have worse disease-specific survival.5 However, once people of color receive care that is concordant with NCCN Guidelines, the outcome disparities are greatly reduced or eliminated entirely.

The time has come for our institutions to have health equity reports, similar to the quality and safety reports they must maintain. This way, we may at least begin to understand from an institutional perspective where our blind spots are to improve patient care.

The most aspirational solution is learning how to train the next generation of oncologists differently than we have to date. I think this will mean equity training not just in medical school and residency, but also during fellowship. Such training will bring much more attention of the impact we have on our patients and will give young oncologists better skill sets of understanding what the resources are in minority communities and how we can better approach care for at-risk individuals.

Closing the Equity Gap

In a keynote address you gave on health disparity research at the 14th Annual AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, you said that health inequity could actually become worse in the era of precision oncology. Why?

Dr. Otis Brawley [Associate Director, Community Outreach and Engagement and Professor of Oncology at the Sidney Kimmel Comprehensive Cancer Center] and others have pointed out well before me that every time there is an introduction of a new technology, approach, or medicine to treat cancer, they are most often accessible to the majority populations, and not to at-risk populations. For example, it remains true that the vast majority of clinical trial enrollment, including trials investigating molecular target markers and precision medicine, do not have substantial minority representation.

The reality is that as we improve our ability to perform precision medicine, target mutations, and increase favorable patient outcomes, I fear that if we continue to do what we have done over the past 50 years and get clinical trial information on a patient population that does not represent substantial numbers of people from rural backgrounds and underserved urban communities, particularly people of color, we run the risk once again of introducing disparities among patient populations, as opposed to eliminating them.

We need a three-pronged attack to close the equity gap. One, again, is getting rid of physician biases or blind spots and giving more equity training. Two, absolutely making sure that community outreach and engagement efforts are not just intermittent and fragmented, but that we put many more resources behind a consistent, more unified, more organized educational effort in our communities, particularly our most vulnerable communities, to enroll minority patients into clinical trials. Three, I can’t emphasize enough the importance of training the next generation of clinical trialists, not only to be able to design and implement clinical trials, but to have a greater awareness of the needs of minority communities.

There is an attempt now by the Bristol Myers Squibb Foundation, National Medical Fellowship (North American Association of Central Cancer Registries) to develop the first-ever program to have a new cohort of medical trainees not only learn how to design clinical trials, but that teaches them how to carry out those trials and be effective communicators about clinical trials in minority communities. That is the hope for tomorrow.

Minority patients are often not asked to participate in a clinical trial, and when they are asked, it often is not communicated in an effective manner. The first sin is not asking and just assuming that minorities do not want to be included in clinical trials, which is absolutely not true. We must become more effective communicators with different patient populations, which is something that is not impossible to accomplish. We just need to be deliberate about helping our trainees and clinicians become better communicators.

Understanding the Link Between Zip Code and Cancer

Although there has been a reduction in cancer death disparities between Black and White individuals, Black people have the highest death rates and shortest survival of any racial ethnic group for most cancers in the United States.2 How much of that disparity is attributed to a person’s zip code, and how does a person’s zip code affect his or her biology?

I would argue that even as of today, zip code and rural or urban neighborhood association play a significant role in who is exposed to clinical trials and access to cutting-edge innovation therapy and outstanding cancer care. If you live next to a National Cancer Institute (NCI)-designated cancer center, there are data showing that you will have a better outcome than if you were treated at a community hospital. That is not to say that community hospitals are terrible or that physicians working there are terrible. They just may not be as well equipped, because they don’t have the resources NCI-designated hospitals have. It’s a matter of a sequelae of lack of resources.

We are just beginning to understand how zip code influences biology and how stress, chronic inflammation, lack of exercise, poor diet, and institutional racism are interrelated and how they impact the reduced life expectancy and poorer health outcomes of minority patients with cancer in the United States.

David R. Williams, PhD [Florence and Laura Norman Professor of Public Health and Professor of African and African American Studies and Sociology at Harvard University] has developed the Everyday Discrimination scale, which is widely used to assess perceived discrimination in health studies. He has studied community trauma and its effects on health and has said that it is not necessary to experience an extreme trauma, such as a gunshot, to feel the health effects of systemic racism.

Simply living in an area of high violence or being in a neighborhood where there is a sense of helplessness over access to healthy food, exercise, and safety contributes to negative health outcomes and negative impacts on DNA. However, as a field, we still have a lot to learn about how the interplay of these factors influences biology.

Tackling the Problem of Living in Urban Heat Islands

During your presentation at the AACR meeting on health disparities in medically underserved communities, you talked about how climate change is having a greater impact on minority populations who tend to live in “urban heat islands” that experience significantly hotter temperatures and are associated with chronic diseases, including cancer. How is climate change disproportionately affecting the health of minority populations?

Climate change is clearly affecting everyone independent of where you live. However, we are noticing that those living in urban heat islands, which are urban or metropolitan areas that are significantly warmer due to dense concentrations of pavement, buildings, and other surfaces that absorb and retain heat, are disproportionately impacted by global warming, including poorer at-risk populations with cancer.

When I think of urban heat islands and global warming and the disproportionately minority populations living in those hotter spots, it exemplifies exactly what I’m trying to get at. You can’t get away from policies like redlining that were instituted decades ago and that are still impacting us today.

Transforming the Health-Care System

This past summer, U.S. News & World Report published its 2021–22 Best Hospitals rankings, which debuted health equity measures that examine whether the patients each hospital has treated reflect the racial and ethnic diversity of the surrounding community. The report found that at up to 80% of the hospitals examined, the community’s minority residents were underrepresented among patients receiving common services, such as cancer surgery and heart procedures.6

As Co-Chair of the NCCN, ACS CAN, NMQF Elevating Cancer Equity Working Group, which has developed an Equity Report Card,3 what strategies are you recommending to reduce racial disparities in oncology?

The Equity Report Card is intended to be a tool for providers, payers, and accreditation entities working to advance racially equitable practices in cancer care. The idea of having a health equity report card is transformational. It includes 17 practices, which we’ve divided into 4 categories, we believe will increase equitable care delivery. The categories include community engagement; accessibility of care and social determinants of health; addressing bias in cancer delivery; and quality and comprehensiveness of care. This is not meant to be punitive. No one is being penalized if these recommendations aren’t followed.

“We as cancer centers, clinicians, and just people of good faith have to figure out once and for all how to get the will to do what we know is right.”
— Robert A. Winn, MD

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We have also made public policy change recommendations for action by Congress, payers (including the Centers for Medicare & Medicaid Services), and other federal agencies to improve clinical trial diversity and support cancer prevention strategies and access to screenings, a diverse health-care workforce, and patient navigation. I think moving forward as a nation, we as cancer centers, clinicians, and just people of good faith must figure out once and for all how to get the will to do what we know is right.

Maybe I’m a little naive, but despite what’s transpired over the past 2 years with the pandemic and the deaths of George Floyd and Breonna Taylor, among others, we are making some progress. And I will continue to be hopeful that we are going to make even more progress in the future.

MORE INFORMATION

For more on strategies for reducing racial disparities in oncology, see an interview with Robert A. Winn, MD, on The ASCO Post Newsreels at ascopost.com/videos.

 

DISCLOSURE: Dr. Winn has received consulting fees from Taiho Oncology, Genentech Advancing Inclusive Research Advisory Board, and Philips’ North American Oncology Advisory Community; payment or honoraria from Company Based Medical Seminar Series, National Medical Association, Frontiers in Oncology Seminar Seminar Series at the University of Maryland, and Global Product Strategy Podcast-Genentech; and support for attending meetings and/or travel from Bristol Myers Squibb Foundation.

REFERENCES

1. AACR Cancer Progress Report 2021: Discovery Science Driving Clinical Breakthroughs. Available at cancerprogressreport.org. Accessed November 17, 2021.

2. American Cancer Society: Cancer Facts & Figures for African Americans 2019–2021. Available at www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf. Accessed November 17, 2021.

3. Elevating Cancer Equity: Recommendations to Reduce Racial Disparities in Guideline Adherent Cancer Care. February 22, 2021. Available at www.nccn.org/docs/default-source/oncology-policy-program/2021_elevating_cancer_equity_webinar_slides.pdf?sfvrsn=e11f66e4_2. Accessed November 17, 2021.

4. Zettler ME, Feinberg BA, Jeune-Smith Y, et al: Impact of social determinants of health on cancer care: A survey of community oncologists. BMJ Open 11:e049259, 2021.

5. Clair K, Chang J, Ziogas A, et al: Disparities by race, socioeconomic status, and insurance type in the receipt of NCCN guideline concordant care for select cancer types in California. 2020 ASCO Virtual Scientific Program. Abstract 7031. Presented May 29, 2020.

6. U.S. News Releases 2021–22 Best Hospitals Rankings. The 32nd edition offer expanded ratings covering 7 new procedures & conditions, health equity measures. Available at www.usnews.com/info/blogs/press-room/articles/2021-07-27/us-news-releases-2021-22-best-hospitals-rankings. Accessed November 17, 2021.


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