Addressing Cancer Disparities Requires Asking Questions and Putting Aside Assumptions

September 28, 2020

Speakers at Patient-Centered Oncology Care® highlighted injustices in the US health care system, the risk of financial toxicity, and how providers can do a better job to ensure their patients achieve health equity, during a panel discussion.

Despite progress on cancer treatments, patients with cancer are still affected by disparities in care, incidence of disease, and outcomes. During a panel discussion at Patient-Centered Oncology Care®, moderated by meeting Co-Chair Joseph Alvarnas, MD, vice president of government affairs, senior medical director for employer strategy, and clinical professor, City of Hope, and editor-in-chief, Evidence-Based Oncology™, speakers highlighted injustices in the US health care system, the risk of financial toxicity, and how providers can do a better job to ensure their patients achieve health equity.

Karen Winkfield, MD, PhD, incoming executive director, Meharry-Vanderbilt Alliance, and Emeline Aviki, MD, MBA, assistant attending, Department of Surgery, Memorial Sloan Kettering Cancer Center (MSK), both explained they were first exposed to disparities as medical students at Duke University and then again when they both started working in Boston.

Medical students often went into rural communities or Black communities to try and improve access to care, but Boston had universal health care coverage before the Affordable Care Act, and it was there that the stark differences of access to care despite insurance coverage became apparent, Winkfield explained.

“It started me on this pathway to understand what some of the other barriers were,” she said. “What are some of the issues that patients are experiencing with respect to their access to care, their inability, perhaps, to access care?”

Winkfield ended up changing career paths from biochemistry to focus on community engagement research, which she viewed as the place to find pertinent information that would “revolutionize” how health care engaged with communities.

Aviki had a slightly different path. During medical school, she also got her MBA, and through her research on alternative payment models and value-based care, she came to realize that the payment models focused on the finances for payers and providers but “left the patients out of the whole equation.” She began to do work on financial toxicity, which describes the financial burden from direct and indirect health care costs on patients that can increase psychosocial distress and adversely affect patient outcomes and quality of life.

At MSK, Aviki is on an affordability task force that attempts to not only improve awareness of patients who might be at risk of financial toxicity but also to “educate providers and patients with respect to early signs of toxicity and how we can empower providers to attack that toxicity before it ever occurs.”

But how exactly do providers help enact change in the system? According to Jeanne Regnante, chief health equity and diversity officer, LUNGevity Foundation, health systems, providers, and other organizations need to start learning from one another and doing a better job of asking questions.

“I think the work in this area requires humbleness, in general, and it requires somebody to always be aware that they might not know something and ask the question,” Regnante explained.

Engaging with vulnerable communities means understanding that you haven’t lived their life and you don’t understand the challenges they are faced with. LUNGevity recently went through its first phase of implicit bias training, during which the staff brought awareness to one’s own assumptions.

Winkfield agreed that humility is necessary in this area of work and when it comes to addressing and understanding how someone’s culture fits into their health and health care.

“I do not believe in cultural competency,” she said. It implies that someone can watch a video and understand someone’s culture. “No, it’s really about humility.”

This humility applies to culture, finances, and even sexual identity. Instead of asking a woman about her husband, clinicians should ask more generally who lives at home with her.

“It's the questions that you ask that can show people that you're open to someone having a lifestyle that's different from, you know, the ‘mainstream,’” Winkfield explained.’’

Medical schools have to do a better job of training people to ask the questions. Ask a person what their diet is instead of assuming the Black patient eats fried chicken and collard greens, she said.

One conversation that is difficult for providers to have is the cost of care. MSK surveyed its clinicians, and of the 350 who responded, 95% said they want to help patients with their financial issues during treatment. But the same proportion said they felt ill equipped to ask the question because they didn’t know what to do with the answer they got, said Aviki.

The taboo of asking financial questions needs to be eliminated entirely, she said. Patients need to feel like they can report financial issues, and physicians should feel like they can ask patients about financial issues. However, Aviki thinks simply making it routine to ask every patient at every visit can help normalize the conversation around finances to make patients feel more comfortable about bringing up issues on their own.

“We are willing to pay tens of thousands of dollars a month for a 3-month progression-free survival difference,” she pointed out. “Well, we can gain that and more by addressing patients’ financial issues and social determinants, as well.”

Ultimately, it will cost more money to put in place the processes and hire new people and analyze the data to be able to address disparities, Regnante admitted. But spending that money will mean making more resources available and ensuring that innovations get to all patients. Winkfield added that the cost is up front, but in reality, the US health care system loses billions of dollars every year because of health disparities. Investing the money now will mean setting up patient navigation, doing financial toxicity screens, and putting patients in touch with needed resources.

“Please take the time to get to know the person in front of you, and figure out what their needs are,” Winkfield implored the audience. “We may not always be able to meet every single one of their needs, but just by asking, we will help to engender the trust that is vital to make sure our patients feel well cared for.”