10 years in, HICOR’s efforts boost cancer care’s value

It started with whiteboards and breakout rooms, with awkward introductions between insurance people, patient advocates, cancer doctors and hospital administrators, all stakeholders in Washington state’s cancer community hoping to improve the quality of cancer care while reducing its high cost.

At the time, early 2014, health care spending in the U.S. had skyrocketed to 17.7% of the GDP and health economists within Fred Hutch Cancer Center’s newly created Hutchinson Institute for Cancer Outcomes Research (HICOR) feared costs would continue to rise. HICOR’s research showed patients in cancer treatment were going bankrupt and turning down lifesaving drugs to keep their families fed. National research indicated the high costs weren’t even translating to better or longer lives, just bigger bills. Something needed to be done.

So, HICOR director Scott Ramsey, MD, PhD, and others at Fred Hutch created a new Value in Cancer Care (VCC) Initiative with HICOR acting as a sort of “Switzerland of health care,” bringing together representatives from all sides of the cancer spectrum for a series of candid conversations and brainstorming sessions. Each year, they convened VCC Summits, “meetings with a mission” designed to identify, measure and mend some of the major drivers of cancer-related costs. And do it without compromising cancer patients’ quality of care.

Patients at that first meeting pointed to the high cost of cancer drugs, to a lack of after-hours access which often resulted in a trip to the ER. Insurance executives pointed to unnecessary imaging tests, to a need for better benchmarks. Providers talked of patients who died in the hospital still receiving chemotherapy when they really wanted to die peacefully at home.

“What would help?” HICOR asked. Ideas abounded: after-hours access to oncology care; provider training for end-of-life discussions; improved patient and provider education regarding symptom management and palliative and hospice care. Then HICOR researchers went to work, designing interventions, measuring responses, tracking data and comparing performance metrics between Washington state hospital systems and clinics.

A decade later, health spending in the U.S. has dropped to 17.3% of the GDP, but the financial burden on cancer patients is still quite high. Ramsey and HICOR co-director Veena Shankaran, MD, thanked stakeholders gathered at the 2024 Value in Cancer Care Summit held November 15 at Seattle’s Bell Harbor Conference Center, for their dedication and hard work, pointing to 10 years of successful pilot studies, community reports, inspired collaborations and other efforts designed to seal the cracks in the system where value was spilling out.

“We are very thankful to this community for allowing us to do this work with you,” Shankaran told attendees. “Your support and engagement really inspires us to continue to move the needle on quality cancer care.”

But, as she and others emphasized throughout the day, the job’s clearly not done.

Bias and other barriers to care

This year’s VCC Summit focused on addressing barriers to high quality cancer care, a theme highlighted through keynote talks, panel discussions and new HICOR data.

Paula Chambers Raney, a colorectal cancer patient advocate from Houston, spoke of her delayed diagnosis and the bias she experienced as a gay Black woman, bias that still represents a significant barrier to care in Washington state and across the nation. Watch the video series Anti-Racism in Oncology, a partnership between HICOR and Cierra Sisters.

“I’d been going to doctors for a year and a half and I had all the signs and symptoms of what I now know was colorectal cancer,” she said. “But I was told it couldn’t be that because I was too young, that I’d just eaten something red. Others told me I was going to hell because I was gay. Some of the things I was told were appalling.”

She was eventually diagnosed and treated — “a county hospital saved my life” — then went on to join the patient advocacy community. Chambers Raney now sits on the patient board of the hospital where she had her surgery and regularly works with underserved patients through the nonprofit Fight Colorectal Cancer. 

“I experienced all the things that come with a cancer diagnosis,” she told the rapt audience. “I was financially devastated and had to hunt for resources because Texas does not have Medicaid expansion. But when I went to Washington, D.C., and shared my story with senators and congresspeople, it changed my life. Advocacy empowered me to make sure what happened to me didn’t happen to anyone else.”

Matthew Mateo Banegas, PhD, MPH, co-director of the Center for Health Equity Education and Research (CHEER) at the University of California, San Diego, and a national expert on financial hardship, talked about the importance of screening patients for financial issues before they become overwhelmed.

“We’ve heard stories about patients skipping medication, going through divorce. Not being able to pay their kids’ college tuition anymore,” he said. “It really does impact all aspects of an individual’s life — it’s not just about the money.”

Connecting patients with financial navigators, community health workers or health insurance navigators can help, but “not all systems have patient or financial navigators unless it’s part of a study.” Data from his Cancer Financial Experience study (CAFÉ), is currently being analyzed, but he shared a few key takeaways.

“It’s important to be aware of the resources that can help patients — both inside and outside of the clinic,” Banegas said. “You also need to ask the patient proactively if they have questions or concerns related to the cost of care. And continue to ask them throughout the treatment process.

“A lot of our patients may be struggling financially from the get-go,” he said. “That’s why it’s important for us to ask about financial hardship early and often. It will change over time.”

Lack of testing, transportation and telehealth

Recent HICOR work revealed another barrier to high quality care: a lack of genetic testing in newly diagnosed cancer patients.

Inherited, or germline, mutations — like some in BRCA1/2, EGFR, ALK and ROS1 genes — drive a variety of cancers, with treatments specifically designed to target them. If patients aren’t tested, they can’t benefit from these treatments. Worse, they may be given ineffective therapies instead.

HICOR researchers analyzed claims and cancer registry data on breast, ovarian, pancreatic and prostate cancer patients diagnosed between 2018 and 2020 and found Washington state cancer clinics aren’t regularly testing cancer patients for BRCA 1/2 mutations. Despite their potential to drive multiple cancers and a decade of recommendations, only 66% of women with breast cancer who met the criteria received any tests. Similarly, only 58% of patients with ovarian cancer received germline genetic testing. 

Results were even more striking in pancreatic and prostate cancer patients. Only 20% of eligible pancreatic patients were tested and a mere 8% of eligible prostate cancer patients were tested to see if their DNA contained a flawed BRCA1/2 gene.

“Even accounting for the time it takes to implement guidelines into clinical practice, these numbers are quite low,” Shankaran said. “There should be at least 80%, if not 100%, of patients tested.”

Other obstacles to care had to do with where patients lived.

“Rurality is a health disparity,” said keynote speaker Banu Symington, MD, who practices medicine at a county hospital in Rock Springs, Wyoming. “Inferior health outcomes can be attributed to lack of access to screening, lack of providers, lifestyle factors such as smoking and decreased health and tech literacy. But that’s only part of the picture.”

Rural areas are also food deserts — areas that lack affordable, good-quality fresh food — with large gaps in broadband and internet access, severely limiting the potential for telemedicine. Transportation is a common barrier to care due to snowstorms, road closures and/or landslides; these can impact grocery and cancer drug deliveries, too. Rural practices also lack the infrastructure, manpower and resources to run clinical trials. And there is little in the way of hospice or palliative services.

“This is why chronic disease outcomes in rural areas are worse than in urban areas,” she said. “Rural medicine is the canary in the coal mine.”

What can be done? Symington said expanded telehealth along with national licenses for telehealth would definitely help. Ditto for providing reimbursement for telephone appointments. And decentralized clinical trials would allow more rural patients to participate in research.