When patients get sick, they need a medical intervention. But what do you do when the patient happens to be the country’s problematic health care system? For Fred Hutchinson Cancer Research Center, home to the Hutchinson Institute for Cancer Outcomes Research, the answer is the same.
The Hutch’s health outcomes and economics group HICOR, led by co-directors Drs. Scott Ramsey and Gary Lyman, held its latest intervention on Friday, April 7, the fourth in a series of Value in Cancer Care Summits designed to help transform cancer care in the Pacific Northwest and beyond.
The full day of meetings and metrics drew about 200 patients, providers, payers, policymakers and researchers from across the country to Seattle’s Bell Harbor Conference Center to share successes, frustrations, tales of financial toxicity and bold ideas on how to better serve patients by reducing the economic and human burden of cancer. Past studies by HICOR have shown that cancer patients are far more likely to go bankrupt. And some find themselves in the position of having to choose between paying for medicine or paying for food.
“We have a problem,” said Dr. Nancy Davidson in her morning plenary presentation, going on to point out the high rate of cancer mortality in the U.S. as well as the ever-spiraling costs of care which, more and more, are being shifted to patients. Davidson was recently named senior vice president and director of the Hutch’s Clinical Research Division and president and executive director of the Hutch’s clinical care partner, Seattle Cancer Care Alliance. She also holds Fred Hutch’s Endowed Chair for Breast Cancer Research.
“The need for us to think about how to do this more effectively is enormous,” she said, offering her take on value-based care. “High value care involves clinical quality that’s evidence-based. It’s also got to be patient-centered so it looks at quality of life, the quality of care experience, patient goals and values and quantity of life.
“And at the end of the day, it needs to be affordable — by individual patients and by us as a society,” said Davidson. “We need to make wise use of the resources available to us.”
Toward that end, HICOR’s director Dr. Scott Ramsey spoke on the need, necessity and inevitability of transforming the cancer care model.
Currently, patients tap health care providers for various services — think checkups, scans, and physical therapy — with the provider billing for each service. The more services, the more fees. And cancer patients often end up with a daunting number of both.
Payment for those services is currently based on volume and is not linked to quality or efficiency. And some argue the system encourages physicians to give as much care as possible, rather than the right or best care.
But that model is changing, Ramsey said, thanks to recent changes in Medicare legislation.
“We are moving from a fee-for-service, pay-for-what-you-do world to a world where payment is going to be based on populations, and providers are going to be held responsible for managing quality and cost within a single payment approach,” he said.
Ramsey said the transformation from a volume-based, fee-for-service model to a value-based reimbursement care model is currently in its “baby steps,” but HICOR hopes to shepherd the process by sharing performance metrics that will give the local cancer care community a “jump start” on revamping their care model.
The Pacific Northwest, he said, can serve as a large “regional laboratory,” where insurance companies, health care providers, researchers and others try out different value-based care models and methods and then sit down at the table together and hash out what works and what doesn’t.
Overhauling a longstanding cancer care delivery service will not be easy, especially since care is provided by both large treatment centers and smaller community clinics, each with its own mix of patients and services. Big or small, though, all providers can learn from each other, the researchers stressed.
“We’re trying to raise the bar for all practices,” said HICOR co-director Dr. Gary Lyman.
One big reason to switch to a value-based system is to reduce the financial burden of cancer care.
“The financial toxicity of cancer is an American epidemic,” said Ramsey, who’s published a number of studies on the subject. “Data suggests that a third of all cancer patients experience extreme financial distress at some point during treatment, meaning they have to remortgage or sell their house, use up all their savings, borrow money from family or friends or go into bankruptcy. A third.”
And the cost of that care is steadily escalating.
By 2020, cancer care in the U.S. is projected to cost nearly $175 billion a year, a 40 percent increase from 2010, and that doesn’t even take into account indirect or out-of-pocket expenses. Sadly, patients and their families are bearing more and more of these costs, putting both their finances and their health in jeopardy. Not only are cancer patients far more likely to declare bankruptcy than those without cancer, those who do go bankrupt are nearly 80 percent more likely to die, HICOR studies have found.
“It’s easy to try to blame one group — pharma or health insurance or providers,” said Ramsey. “But financial toxicity is much more complex than that and it’s an issue we have to tackle."
Carla Tardif, CEO of the Boston-based financial assistance nonprofit, Family Reach, said she’s thrilled people are finally talking about it.
“We’re been around for 20 years and much of this has not being talked about or addressed, or it wasn’t until Dr. Scott Ramsey entered the scene,” said Tardif, a two-time cancer survivor.
Tardif said she regularly talks with patients who’ve lost jobs, homes and more after a diagnosis. Some skip treatments in order to put food on the table. Others become homeless.
“I’m seeing patients like a single mom with ovarian cancer and two young kids, and they’re all sleeping on a park bench in Philly because she lost her job and her home due to cancer,” she said.
Part of the problem, she said, is that cancer patients are often ashamed to talk money with their providers or worry their care will be impacted if their doctors know they’re financially strapped. Another problem: providers don’t bring it up.
“Many say ‘We don’t talk to patients about money, our focus is on cancer’,” she said. “But patients need to talk to somebody.”
Camins Bretts, a stage 4 endocrine cancer patient, said figuring out which patients are more likely to be hit by high costs is key.
“If you think it’s bad for common cancers like breast or colorectal cancer, try having a really rare one,” Bretts said. “My personal out-of-pocket costs have increased 400 percent since I was diagnosed. One of the things we need to look at is who is getting the strongest financial hit. This has severely impacted my ability to access care. And I know lots of people like me.”
Lyman acknowledged that cost is “the elephant in the room for most cancer patients.”
“Not only the burden, but getting treatment or continuing treatment,” he said. “And it has a direct impact on clinical outcomes in patients, not to mention quality of life and family issues. It’s at the heart of our work.”
HICOR’s researchers are working to identify areas where stakeholders can bump up value and bring down cost, a complicated, multidimensional issue. Friday's participants proffered ideas to accomplish this: bundled payments; group visits; virtual visits; oncology medical home programs; expanded clinic hours; centralized phone triage; patient-to-patient mentorship; text messages to improve oral drug adherence; financial navigators and risk assessment.
As Tardif put it, providers need to have the “understanding that patients are people and that cancer affects the whole family.”
All agreed that first and foremost, patients need to receive good, consistent, evidence-based care, which doesn’t always happen.
Breast cancer patient Bridgette Hempstead, founder of the African American cancer support group Cierra Sisters, said she’s encountered a number of patients who’ve been offered wrong or inadequate care over the years.
“Even today, there are African American women who’ve been diagnosed with a HER2 positive breast cancer and are not getting the proper treatment,” she said. “My community is hurting and my community is dying at a higher rate.”
Breast cancer patient Rebecca Seago-Coyle, 42, of Seattle who also received inappropriate — and conflicting — recommendations after she diagnosed at age 35, lauded HICOR's work.
“The work that they're doing, talking about the outcomes of cancer treatment and long term quality of care, is so important," she said. "I love the idea of sharing best practices and of transparency between clinics. That only helps you as a patient be more empowered. You're part of that team, too. And with patients at the table, they'll have a better undertsanding of how all of this impacts us."
Ramsey acknowledged cancer care is always going to be expensive, but said the HICOR group and others are trying to "figure out ways to reduce that trend.”
“Some things, like the cost of drugs, will be beyond the control of individual oncologists,” he said. “But they have to be careful about prescribing things that work and not prescribing things that don’t work. Some providers order expensive PET scans for patients with early stage breast cancer. That’s a $3,000 test that has no value [based on ASCO recommendations]. A lot are doing that, and we need to discourage that pretty vigorously. We want people to do the right thing and not do the wrong thing.”
Most of all, the HICOR group wants to continue to function as the “Switzerland of health care,” providing a neutral forum where stakeholders come together and hammer out a solution that works for everyone — particularly patients.
“It’s going to take a while, but I’m comforted by the fact the conversation is happening,” said Tardif.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at email@example.com.