In February, as part of Black History Month, the Food and Drug Administration’s (FDA) Oncology Center of Excellence (OCE) hosted a webcast titled “All Power to the Patient: Achieving Cancer Health Equity.” Four months later, the death of George Floyd and nationwide protests brought America's institutional, structural, and systemic racism to the front of the public consciousness. As these issues plague our country and lead to inequities that impede access to equitable and quality care for underserved communities, this informal conversation between a group of six Black and African Americans offers the oncology community gems of wisdom that bear repeating. First, healthy equity remains a priority for many in the oncology community.
Radiation oncologist and ASCO President-Elect, Lori Pierce, MD, said that ASCO has long had an interest in improving the cancer care of minority patients, and that “Health Equity” would be the theme of her Presidency.
Healthy equity is also a priority of the American Cancer Society Cancer Action Network (ACS-CAN). “We are on a mission to improve the social determinants of health that are critical to reducing the burden of cancer,” said Felicia L. Woods, Esq. “Cancer affects everyone, but it does not affect everyone equally.”
The FDA has done much work in the field of health equity, although, when polled, many in the audience were unaware of the agency’s efforts. “Our vision is to create a future where health equity is a reality for all,” said Jovonni Spinner, MPH, senior public health advisor in the FDA Office of Minority Health and Equity. “We are creating programs, resources, and materials that resonate with our diverse communities.” Spinner stressed the importance of tailoring education linguistically and culturally so that people see themselves reflected in these materials to help patients make informed health decisions for themselves and their loved ones.
Second, navigation is one solution to improving health equity.
Navigation can help level the playing field for underserved patients who often come into a cancer diagnosis with a deficit of information, said Lisa Simms Booth, Executive Director, Smith Center for Healing and the Arts. Sharing information about the robust navigation services offered at her program, Simms Booth continued, “Navigation is really what health equity is about. Meeting people where they are, but also making sure that we treat the whole person and meet all of their physical, social, mental, and spiritual needs.”
Third, community engagement is key.
“We need to have a thoughtful approach to health equity,” Simms Booth recommended. “There have been too many times when organizations ‘swoop’ into a community and say we are going to do this, or we are going to do that, and then leave. We need to be thoughtful about who is engaging and [recognize] the importance of a sustainable relationship.”
“Communication needs to be authentic and genuine,” Woods urged. We must seek out principal investigators who look like the patients we are trying to accrue to our clinical trials. Our goal, she said, should be to “keep clinical trials within the community and run by providers from that community.”
When going into an underserved community, Thelma D. Jones, Founder of the Thelma. D. Jones Breast Cancer Fund and an 11-year breast cancer survivor, advised to first ask what assets are already there, and how these assets can be utilized. “Work with the people who live there. The faith-based institutions who serve there. Engage and involve the people in the community. [Seek out the] ones who are willing to help you move the needle forward and remove barriers to equitable care.”
Jones went on to say that provider and other healthcare organizations going into communities to offer education and information around clinical trials need a paradigm shift in their approach. “These people do not know you or why you are there. They want to know why you want this information, and what you are going to do with it,” Jones said. Her most important piece of advice: listen. “If you want to help people, you first have to know how they feel. Between your knowledge [of cancer and cancer treatment] and what they are saying is where some type of communication can occur.” Finally, Jones warned that even after all this effort “the community may still resist you. And you can’t blame them. Just go back to the drawing board and keep trying.”
Fourth, to improve health equity, we must first listen to the people we are trying to help.
Having patient advocates share their cancer experiences in their own communities is critical, said Woods. People who have gone through a clinical trial and are willing to talk at churches or community centers can be powerful ambassadors. “These messengers are key to getting conversations about clinical trials started in the community,” advised Woods.
These first-person stories from those who live in the community and who have participated in a clinical trial can help others “become more empowered about having conversations with their physicians,” Spinner agreed. Patients feel more comfortable proactively initiating discussions about clinical trials instead of waiting for their physician to bring it up.
Jones spoke powerfully about the importance of cancer survivors being their own advocates. “We cannot just leave it to our doctors and others to know what is best for us. We must be willing to speak up.” But she admitted that is often a challenge for people of color. Born and raised in the south, Jones said, “My parents taught me not to challenge adults. And certainly not to challenge a white man in a uniform or a white coat.” Jones went through the Navigation Program at the Smith Center for Healing and the Arts and said that patient navigators can help break down the fear, intimidation, and lack of trust in the healthcare system that still exists for many minority patients.
Patient advocate and prostate cancer survivor Robert Carey suggested that support groups are one avenue to meet and hear from the people you are trying to educate about clinical trials and that “support group members can be excellent community ambassadors.”
Dr. Pierce agreed that this kind of bi-directional education is key to improving health equity. She went on to say that providers and others need to ask our underserved patients “What help do you think you need and what can we learn from you?” She concluded by urging that “we not go into communities with the message that we are here to rescue you. There may be some healthcare needs in this community, but there are also lessons we [providers] can learn.”
Finally, as current events have reminded us, health equity is not going to be solved by one organization and it is not going to be solved overnight.
“When you are working with an issue like health equity, you are not going to be able to snap your finger and have a result,” warned Smith. The panel agreed that to improve health equity, organizations have to be in it for the long haul and [work] in tandem with partners that are trusted by those who live in the community. “We can’t keep putting a band-aid on a gaping wound. We need buy-in from every stakeholder if we are to truly achieve health equity.”
An important initiative that ASCO is working on with the NCI, FDA, and the Friends of Cancer Research looks to increase the eligibility criteria for trials. “When you become too narrow in focus, you stifle diversity. If [clinical trials] are too prescriptive, they will not be inclusive,” Dr. Pierce stated. In addition to making clinical trials more inclusive, Dr. Pierce says the focus must be in decentralizing clinical trials.
The FDA has a Diversity in Clinical Trials Initiative with a wide range of print and digital materials that focuses on language and culture to break down barriers for the country’s diverse patient population, but Spinner says that stakeholder engagement remains at the crux of the agency’s efforts. Working with other organizations to synergize health equity efforts and create consistent messaging is key. “[The FDA] recognizes that one person or one organization cannot do it all,” admitted Spinner. Instead the agency focuses on building collaborations and ensuring that “multiple voices are heard.”
One key area of FDA focus is diversity in clinical trials, which aligns well with the ACCC 2020-2021 Presidential Theme discussed earlier and may be an avenue for future collaboration between the two organizations.
