Beyond Efficacy, Toxicity, and Cost: Patients Define Cancer Care Value in the United States

January 2021 Vol 12, No 1
Elizabeth Franklin, PhD, MSW

When it comes to cancer care, organizations tend to define value in terms of objective factors like efficacy, toxicity, and cost. But according to Elizabeth Franklin, PhD, MSW, executive director of the Cancer Policy Institute at the Cancer Support Community in Washington, DC, patients tend to define value differently when it comes to their care. At the Academy of Oncology Nurse & Patient Navigators 11th Annual Navigation & Survivorship Conference, Dr Franklin provided an in-depth review of the concept of value assessment, and also shared her own research into exploring factors that survivors consider valuable compared with those in value frameworks.

“If nothing else, we all know that healthcare in the US is expensive, and it’s particularly expensive in oncology. So there is going to be a continued role for value assessments in the US,” she said. “Value, in its most simplistic terms, is the best quality care delivered at prices equal to the value that care brings to the healthcare system or to patients.”

What Is a Value Assessment?

“If you haven’t heard about the concept of value assessment, don’t worry; you’re not alone,” she said. “It’s a policy topic, but something I think anyone involved in healthcare should be aware of.”

Oncology costs in the United States have nearly doubled over the past 2 decades, and prices are rising more quickly than in any other field. These costs account for about 5% of total US healthcare spending, and oncology drugs represent the largest costs to Medicare and hospital pharmacies.

But what does this mean for patients? Approximately 30% of cancer survivors report experiencing some financial hardship, 32% report being worried about medical debt, and 33% of adult cancer survivors report cancer-related financial distress. “I’m talking about financial toxicity, which I know we’re all incredibly familiar with, especially the financial navigators among us,” she said. This toxicity can lead to behaviors that put the patient at physical, emotional, and financial risk, like skipping doses, exhausting personal savings, and facing bankruptcy.

Health Economics

According to Dr Franklin, there are certainly other cost drivers within the healthcare system, but value assessment tends to focus on drugs and therapies. “Because cancer care is so expensive, and because it really means the difference between life and death for many people, it’s a major focus of the value conversation,” she said.

In theory, consumers make choices based on what they are willing to pay, and manufacturers consequently set market prices based on the consumers’ willingness to pay. However, this dynamic hinges on well-informed consumers who understand what they’re buying and are willing to pay out-of-pocket for it. But when it comes to cancer treatment, consumers are not well informed about the cost of treatment.

“Only in very rare cases are patients told exactly what they’re going to pay out of pocket, unless they have access to a financial navigator (which is why they’re so important),” she noted. “It’s not like purchasing a car; determining whether you’re going to need chemotherapy or radiation or surgery is not like deciding if you’re going to need heated seats. And it can evolve over time, so it’s not something that you may know right away. The traditional sense of health economics that’s applied to virtually everything else in our economy doesn’t apply to medicine, which makes it incredibly complicated to make some of these economic decisions.”

Defining Cancer Care Value

Dr Franklin quoted one of her favorite takes on the value conversation from a 2015 study conducted by Ryan Callahan and Ara Darzi: “The value challenge is this: how to expand access to high-quality, patient-centered care in a world where more people with higher expectations develop cancer more often and use ever more expensive treatments at a time of decreasing public money to spend per person.”

Not only are there more people in the United States than ever before, but as the baby boomers continue to get older, more and more of them are facing cancer diagnoses in a country with scarce health resource dollars to spend, she explained.

The United States does not operate on a single-payer health system, so the question of how to provide more high-quality care to more people has led a number of organizations to try to determine what is valuable in terms of cancer care. These value frameworks have been developed by organizations like the Institute for Clinical and Economic Review (ICER), the American Society of Clinical Oncology, and the National Comprehensive Cancer Network. ICER develops value assessments based on efficacy, toxicity, and cost. These are used to inform insurance companies, so the insurance companies can decide what goes on formulary for patients. The other groups tend to focus more on the patient/provider relationship.

“While this may seem like a wonky policy topic that we don’t need to keep pace with, it’s incredibly impor­tant because insurance companies are paying attention to the decisions that ICER makes,” she said. “If there’s a new drug and ICER says ‘it’s not valuable, and this is what it should cost,’ the formulary could say, ‘based on the evidence, we’re not going to cover this drug.’”

What Do Patients Want?

But according to Dr Franklin, patients care about a number of determinants of value beyond efficacy, toxicity, and cost, and these are not typically captured in the peer-reviewed literature and randomized controlled trials.

This led to her research question: How do patients define cancer care value in the United States, and how do those definitions align or conflict with the existing ways in which cancer care value has been defined?

“I’m a qualitative researcher for the most part, and I don’t believe that there is a universal truth to be found on every topic,” she said. “What I mean by that is that my experience is going to be different from your experience, and I think that that’s incredibly true for patients with cancer.”

She interviewed 26 people for up to 2 hours at a time. By her second interview, she realized that she needed to start asking people about their life before cancer. “I was starting by asking what kind of cancer and therapy they had, but I didn’t know who they were before cancer, and that’s incredibly important,” she said. “Spending the time to get to know them is not only important for understanding the patients that you’re talking to, but it’s incredibly important for establishing rapport as well.”

Dr Franklin asked the participants questions related to a number of different aspects of the cancer experience, and she found that their answers typically fell into one of a handful of categories. For example, regarding the experience of being diagnosed with cancer, patients typically fell into:

  1. “Will I survive this? When life is threatened by cancer” (People in this category felt fearful).
  2. “It is what it is: attacking cancer and getting back to life” (People in this category decided they would beat their cancer).
  3. “Sense making: when expectation and reality collide” (This tended to be patients who never smoked, exercised regularly, etc, and could not make sense of their diagnosis).
  4. “A silver lining: when cancer provides an answer” (These patients felt validated after seeking a diagnosis).

She also asked questions about other aspects of the cancer journey, including the impacts of cancer and cancer treatment, experiences of treatment decision-making, and social and emotional challenges and support, among others.

When she asked each of these patients what they valued most when it came to their treatment, they most often cited access to high-quality, personalized therapies; access to alternative and/or complementary services; universal access to healthcare; positive and trusting relationships with providers; and research and funding for overlooked cancers. When asked who should determine value, the vast majority said it should be patients, caregivers, and/or experts.

According to Dr Franklin, one of her biggest takeaways from this research was recognizing how much patients value personalized medicine rather than a one-size-fits-all approach. Additional valuable factors included hope, personal agency, and family (ie, not burdening family members with medical debt).

“Have in-depth discussions with patients and identify their values. To me, one of the most interesting pieces of this research was how common it was for patients to not understand the concept of value,” she said. “To me, that seems like they aren’t being asked what they value.”

She hopes these findings will help to highlight the importance of shared decision-making, particularly in terms of identifying patient values and goals, as well as patient navigation, ethical obligations (in terms of value and access), and advocacy.

“I work with groups like ICER to bring them the patient voice. Anytime there’s an oncology assessment on the table, it is our responsibility to tell them what patients are dealing with, so that value assessments are as patient-informed and patient-centered as possible,” she said. “At the end of the day, it’s evidence generation that’s going to push us into the future in terms of the science around patient values.”

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Last modified: February 9, 2021

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