Fred Hutch’s HICOR group releases its Community Cancer Care in Washington State: Quality and Cost Report, which:
It’s no secret that cancer can be a costly nightmare.
New drugs can be wildly expensive; ditto for imaging, surgery, chemo, radiation, ER visits, treatment-driven side effects and complications; and combined, the whole shebang can result in a huge financial burden for everybody, especially patients.
Studies done at Fred Hutchinson Cancer Research Center show cancer patients are 2.5 times more likely to go bankrupt than those without the disease, and bankrupt patients are about 80 percent more likely to die, either because they can’t afford treatment or refuse it so they won’t leave their families buried under a mountain of debt.
In other words, it’s not just the cancer that can kill you; the high cost of cancer care can, too. It’s common enough, there’s even a name for this deadly side effect: financial toxicity.
Current projections indicate that as our population ages (and grows), we’ll be spending $175 billion a year by 2020. High drug prices are certainly a part of the problem and get most of the publicity, but Big Pharma's products only account for about 30 percent of the total cost of cancer care, and that figure can vary by specific disease type.
And it’s not just that costs are spiraling up and up and up, it’s that the quality of our care isn’t. Among the 11 developed nations analyzed by the 2017 Commonwealth Fund report, the U.S. health care system ranked last (or close to it) in access, administrative efficiency, equity, and health outcomes.
The bottom line: Our cancer care system itself is in critical condition and somebody needs to figure out how to “treat it.”
One culprit is health care’s current fee-for-service model, which incentivizes quantity over quality. Among other things, this model has been called health care’s “dangerous addiction.”
The federal government knows it’s a problem and has been steadily nudging clinics and hospitals toward value-based care through its “value over volume” MACRA Initiative and the Oncology Care Model, or OCM, which rewards those with better care, smarter spending and healthier people. The recently released President’s Cancer Panel also touts value-based pricing and use in its list of top recommendations.
But how do we determine what’s value-based care and what’s not? And who decides: Insurance companies? Hospitals? Patients?
Why take on this challenge? HICOR weighs in:
“There’s really only one reason: I believe strongly that better transparency will ultimately improve care and (hopefully) lower costs for patients.”
— Dr. Scott Ramsey, director of HICOR
"After years of treating patients with cancer and seeing an increasingly dramatic impact of rising health care costs on their lives, I felt it was imperative that we engage everyone involved, including patients, providers, health systems and payers, to come up with reasonable approaches to improve the quality of patient care while constraining costs and improving the overall value of what we provide to patients. We live and work in very exciting times in the field of cancer treatment but the dramatic progress that we have seen and continue to see has not been shared by everyone and has presented an ever-increasing financial burden on those we care for. So with this effort we begin by identifying the most pressing issues, capturing measures of quality and cost, and then transparent reporting that will enable providers and health systems to identify areas needing improvement and take action to improve the quality of care throughout the region. It will also enable and encourage patients to make more rational choices that meet their needs and goals of care and work with their providers to make shared decisions based on the best available information for their specific circumstances."
— Dr. Gary Lyman, co-director of HICOR
More importantly, who on Earth would be willing to take on the mammoth task of drilling down into the data to determine — rigorously, painstakingly, scientifically — which cancer care practices offer value and which don’t so we can “cure” our ailing cancer care system?
As it turns out, a bunch of metrics-mad scientists from the Pacific Northwest stepped up to the task. Today they released the first public report linking quality and cost measures for cancer clinics, a result of years of teamwork.
It started six years ago when internist and longtime public health researcher Dr. Scott Ramsey decided to formalize the health economics work he’d been doing at Seattle’s Fred Hutch and created the Hutchinson Institute for Cancer Outcomes Research, or HICOR, a multidisciplinary team of public health researchers devoted to putting the kybosh on cancer’s heavy financial burden.
Ramsey, as HICOR director, envisioned the group as a “Switzerland of science,” a research-focused, neutral arbiter that could bring together stakeholders to identify issues and hash out solutions so that all cancer patients could get the care they needed without losing their homes, their assets or their lives.
With the help of co-director and clinical oncology researcher Dr. Gary Lyman and a collection of similarly concerned oncologists, data scientists, programmers and administrators, the group began doing outreach and essentially created a community laboratory for cancer care delivery research.
HICOR held a series of summits, working meetings where everybody in the cancer care world had a voice and a seat at the table: insurance companies (payers); oncologists, primary care physicians, community health centers and hospital administrators (providers); clinical and public health researchers; policymakers; large regional employers; patient advocacy groups; and, last but not least, individual patients.
And then, as scientists do, they started asking questions.
Are cancer providers following recommended treatment and surveillance guidelines? Are doctors over-testing their patients? Should doctors and hospitals be more transparent about cost? Do doctors talk to patients about what they want at end of life — and if so, are those conversations covered by insurance? Are patients talking to their families about their wishes and goals of care? And is it right to put dying patients through a barrage of harsh therapies if the treatments aren’t going to save their lives?
The process was cumbersome, exhausting and at times even painful — we’re talking about cancer, after all — but with every conversation, every conference call, every breakout session and scribble-covered white board, HICOR gleaned insights into our cancer care delivery system.
Then they went to work figuring out how to fix the issues they found.
Since you can’t manage what you can’t measure, Ramsey and his crew first had to identify what cancer care metrics they could even focus on. Stakeholders provided suggestions — nearly a thousand of them — which HICOR boiled down to the following four high-priority areas:
Once these areas were selected and the research methodology was in place, the team began gathering data: cancer registry data from the Washington State Cancer Registry (WSCR) and Western Washington Cancer Surveillance System (CSS), which confirmed diagnosis and treatment of Washington state patients; and claims data from nearly every insurer in the state, including Medicare, reflecting how much providers were paid for services and/or drugs (patient out-of-pocket costs were not included).
They selected a time period, 2014-2016, and used national cancer guidelines and a bit of biostatistical prowess to come up with calculations to accurately reflect quality (many based on OCM’s performance-based methodology).
Then, data in hand, they began to look at the cancer care delivery system in more than 25 Washington state clinics through the lens of “quality” and “cost.”
Value, they knew, sat at the sweet spot where quality care, good outcomes and affordability intersect.
The result is HICOR’s first Community Cancer Care Report, a highly transparent, hugely ambitious statewide snapshot of cancer clinic performance — the first such report in the nation.
It is very much a first step, HICOR has stressed, offering an initial window into the complicated world of cancer care using regional, population-level data. Patient-reported outcomes, or PROs, for instance, haven’t been folded into the mix yet, although that’s on HICOR’s radar for future reports; evaluating Washington state’s “value performance measures” will be an ongoing process. It’s also not designed as a decision-making tool for patients although that may come later, as well.
But it’s a start — a lay of the land. And overall, there is good news.
Nearly 98 percent of patients received appropriate anti-nausea drugs during chemotherapy. A big majority of patients (85.6 percent) received the recommended therapy for their cancer type, after adjusting for clinic size and patient characteristics.
But there is room for improvement: Over half of cancer patients had either an emergency department visit or an inpatient hospital stay in the six months following the start of their chemotherapy. And the care costs associated with treatment of patients with breast, colorectal, and lung cancers varied substantially among the mix of clinics. Some cost discrepancies can be partially explained — hospitals, particularly teaching hospitals, may charge more for cancer care than smaller clinics. Sometimes, these discrepancies will need to be “biopsied” in order to determine what the problem is.
The HICOR report breaks it all down, metric after metric, to give providers a view into where they stand in relation to each other and the entire region.
Ramsey and his team hope clinics will use the report to learn from each other and enhance cancer care across the state. Treatment centers that have higher quality care can share best practices with those looking for ways to improve. Oncologists can use the results to advocate for programs — think financial navigators or telephone triage lines for patients with after-hours emergencies — that have worked well at other locations.
HICOR has already published several studies based on findings from previous summits and the stakeholder working groups that have met regularly to discuss current practices and new ideas. They’ve discovered that more than half of cancer patients’ ER visits could probably have been avoided with better symptom management and better outpatient care; the team recently published a follow-up study on ways to identify these avoidable ER visits. Other studies have looked at the use of aggressive treatment at end of life and the usefulness of financial navigators for cancer patients, with more published research on the way.
Early in the process, at HICOR’s first Value in Cancer Care Summit in 2014, Ramsey acknowledged the community laboratory idea was an “out-of-the-box thing and one of the edgier things the Hutch has done in a while.”
The same could be said of this newly published report.
It’s definitely unconventional — each care provider appears, by name, among all the other clinics in the state. But the data-driven insights within it will, ideally, inspire ongoing collaborations between all parties that will help make cancer less of a cost nightmare moving forward.
Funding for the report was provided by Fred Hutchinson Cancer Research Center and by generous donations from Premera Blue Cross, Christopher and Yvonne Keene, and Martin and Kari Shelley.
“As a cancer patient, I became involved with HICOR because I realize the best cancer care is expensive, and many patients can’t access it. I want to help guide our health care system toward providing high quality care to everyone afflicted by cancer.”
— Janet Freeman-Daily, stage 4 lung cancer patient advocate
"As an oncologist, my primary vision is to heal patients and provide them the best of technology and drug developments offer. However, the cost of the health care system is enormous and unaffordable. As the medical oncology community, we do have the obligation to bring the work to improve the quality of care while bringing the cost to a manageable level. HICOR took a major leap toward bringing all sorts of organizations from community oncology, large hospital systems to academia to work together to achieve this goal in our state. I believe in taking a part in this and improve the patient care in a meaningful way by participating in value-based care efforts."
— Dr. Sibel Blau, medical director, Hematology-Oncology, Northwest Medical Specialties
"HICOR presented a unique opportunity for Premera Blue Cross to partner with other key stakeholders in identifying opportunities for improving cancer care. The report focusing on regional cancer clinic quality and cost performance will provide transparency to providers, employers and other health plans, help us to learn from one another and set the stage for collaboration to improve cancer care."
— Dr. Ted Conklin, VP of Collaborative Healthcare Solutions at Premera Blue Cross
Diane Mapes is a senior editor and writer at Fred Hutch Cancer Center, who's written for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor and patient advocate, you can reach her at dmapes@fredhutch.org or doublewhammied.com / @double_whammied / @doublewhammied.bsky.social. Just diagnosed and need information and resources? Visit our Patient Care page.
Every dollar counts. Please support lifesaving research today.
For the Media