A keynote session at the NCCN Virtual Annual Conference brought a panel of patient advocates and experts together for a timely and necessary discussion about strategies to reduce racial disparities in oncology.
Although racial disparities have long been present both in health care overall and in cancer care, this past year has seen a greater emphasis on potential strategies to close long-existing gaps. A keynote session at the National Comprehensive Cancer Network (NCCN) Virtual Annual Conference brought a panel of patient advocates and experts together for a timely and necessary discussion about possible strategies to reduce racial disparities in oncology.
The session included input from Shonta Chambers, MSW, of the Patient Advocate Foundation; Elizabeth Harrington, a partner at Public Opinion Strategies; Lisa A. Lacasse, MBA, president of the American Cancer Society Cancer Action Network; and Robert Winn, MD, director of the Virginia Commonwealth University Massey Cancer Center.
First, Alyssa A. Schatz, MSW, gave an overview of the landscape in cancer disparities. Overall, evidence shows that people of color are less likely to receive optimal care, regardless of their insurance status, than white people. The root causes of disparities are many and are complex, spanning from implicit bias in care delivery to a lack of representation in the oncology community, as well as social determinants of health.
Schatz spotlighted the Elevating Cancer Equity (ECE) initiative, a collaborative program between the American Cancer Society Cancer Action Network (ACS CAN), the NCCN, and the National Minority Quality Forum (NMQF). The ECE Initiative aims to address racial disparities in cancer care by:
Lacasse picked up the discussion to dive deeper into the ECE initiative.
“ACS, along with our partners staunchly believes that everyone deserves a fair and just opportunity to prevent, find and treat cancer,” Lacasse said. “And it's worth repeating everyone, fair and just. Needless to say, that's easier said than done with our existing health care system. I know this value is strongly shared by our partners at NCCN and NMQF. And really, this issue of “fair and just” is the core of the Elevating Cancer Equity project.”
Existing and established research exists, Lacasse said, but the research often stops short of examining individual experiences of discrimination in care. Provider, patient, and caregiver perspectives are all important in this regard, she said. Their voices were taken heavily into account as the ECE working group developed recommendations to work toward minimizing disparities in cancer care, she said.
Harrington detailed 2 national online surveys undertaken as part of the ECE initiative: a survey of600 cancer patients or survivors and 300 caregivers, and a survey of 208 oncologists, both aiming to assess perceptions on health disparities and racial bias in cancer care. They took oversamples of Black and Hispanic patients to ensure they had large enough sample sizes to report the data.
After asking respondents about 14 things that oncologists could do, key findings were that Black and Hispanic patients responded with more reports of negative experiences, like receiving poor quality of care based on their financial situation, than White patients. Significant majorities of the Hispanic and Black patients and caregivers also reported that racial bias is occurring in cancer care today.
When asked about 7 potential negative experiences with care, the most common for patients and caregivers were feeling that their questions were not answered in a way that was easy to understand (30%), that their cancer care team made assumptions based on financial circumstances (25%), and that they did not feel comfortable asking their oncologist questions (25%).
When asked about the way NCCN guidelines are implemented with patients across racial and ethnic demographics, 65% of oncologists felt that usage of NCCN guidelines does not vary based on race of the patient, noting that the guidelines direct practice regardless of the patient and are applicable for all groups. Instead, they point to socioeconomic factors as more of a barrier to usage. In the 35% of oncologists who agree that the rate of NCCN guideline use does vary based on race, key mentions were that subconscious, inherent bias plays a big role and that physicians need to educate themselves on intrinsic bias to mitigate this issue.
Chambers and Winn, co-chairs of the ECE Working Group, gave an overview of the initiative and the ways in which the group, which comprises 17 nationally recognized expert physicians, patients, caregivers, researchers, and industry.
“The composition of the working group was intentional, because we realized for equity and cancer care to be achieved, that it will require engagement across the entire health ecosystem, and patients and caregivers should be at the core of these discussions,” Chambers said. “It was critically important for us to have patients and caregivers actively engaged in this process.”
The practice change recommendations born from the working group’s discussions on equitable care delivery were deemed the Equity Report Card, intended to serve as a tool for providers, payers, and accreditation entities to address disparities.
There are 17 practices in the Equity Report Card, divided into 4 categories:
“We realize that some of these items may seem difficult to operationalize or may even be viewed as just another requirement that adds to the already large administrative burden or cost,” Winn said. “I get it. But as we progress through these recommendations, we urge you to consider previous transformations in our health system.”
The shift to measuring quality and addressing patient safety is one example of a change that faced similar concerns. But if the same urgency and attention is dedicated to mitigating racial disparities in care, change is possible.
Incorporating the community into the process is key, and the Equity Report Card includes practices like marketing and educational materials with linguistically and culturally appropriate messaging for the community being served, contracts or formal partnerships with community-based practices and organizations, and conducting community health needs assessments to form action plans.
Addressing accessibility of care and social determinants of health includes facilitating things like transportation and flexible hours for screenings and treatments, as well as patient navigators who are representative of the demographics in the community. Those navigators or community health workers should also be part of a process to navigate patients with social needs who would benefit from local or national resources. Collecting data and continuously improving is also important.
To address bias in care delivery, practices, institutions, and the health system need to build diversity, inclusion, and equity into their policies. The Equity Report Card notes things such as recruitment, hiring, and promotion policies as well as resource allocation to make progress in this regard. That includes minority researchers and practitioners as well as patients and caregivers. Health information technology can also be an aid in identifying the moments where shared decision making and care planning disparities can occur so that they can be addressed. Implicit bias, a paramount issue perpetuating disparity that was a common thread throughout the session, should be addressed with at least annual employee trainings.
Care quality and comprehensiveness, the fourth item on the working Equity Report Card, puts an emphasis on ensuring all patients are afforded the same quality options and attention from care staff. That includes offering or referring patients to preventive and supportive care services, such as smoking cessation or weight management programs, when appropriate. Clinical trials, another area of oncology that sees significant and ongoing racial disparities, should also be discussed with all patients as appropriate for the disease and medical history. Culturally and linguistically representative navigators are an important piece of providing quality care from the patient perspective.
As the ECE works to make change, care delivery is far from the only piece of the puzzle. In that vein, the ECE came up with 16 policy change recommendations by Congress, payers, federal agencies, and state governments. The full list can be found at nccn.org/policy.
“To truly address racial disparities in cancer care, we must also pursue structural system changes,” Chambers said. “And many of these recommendations will only be able to be widely adopted when policy actually catches up with practice.”