The first few months (or years) after a breast cancer diagnosis can be nerve-wracking for patients. After an unrelenting merry-go-round of blood tests, scans, surgeries, chemo infusions and radiation blasts, everything comes to a screeching halt. The oncologist tells the patient to go home, to heal and to come back in three months, then six months, then a year. But in-between those checkups, a host of questions arise.
Is this normal? Is that normal? And the biggest question of all: Has the cancer come back?
Patients, anxious for answers, may push for tumor-marker tests or advanced imaging tests like PET or CT scans even though they’re not exhibiting any signs of a recurrence. Oncologists – or even primary care physicians – will also order tests for asymptomatic patients to provide peace of mind for everybody, including themselves.
But these tests can come with a cost, monetary and otherwise: over-testing can lead to misdiagnosis, overtreatment, unnecessary exposure to radiation and even more anxiety for those patients who receive a false positive result. Testing when not warranted doesn’t necessarily help cancer patients; in fact, it may simply drive up the economic – and human – burden of cancer care.
But what can be done about it? And where do you start?
The Hutchinson Institute for Cancer Outcomes Research, or HICOR, plunged into this financial fray yet again on Monday at its second annual Value in Cancer Care Summit, a working meeting designed to address just these kinds of care and cost-focused issues.
Meeting with a mission
“This meeting is central to what we do,” said health economist and HICOR Director Dr. Scott Ramsey in his opening remarks. “Today we’re going to focus on designing programs, ways we can go into the community and improve care. We’re open to seeing ideas from everyone – patients, providers, payers and delivery systems.”
About 100 people attended the event, held at a conference center along Seattle’s waterfront, including physicians, hospital administrators, insurance company representatives, policymakers, and of course, patients.
Formed in 2012 at Fred Hutchinson Cancer Research Center, HICOR uses a multipronged approach to reduce the crippling costs of cancer care. In the coming months, it will also address ways to bring down costs in the realm of pharmaceuticals and medical devices.
The institute is part of a growing national trend to examine – and staunch – the rising tide of cancer care costs, which are estimated to reach $175 billion a year by 2020.
Family homes are lost to this cancer care quagmire, along with college educations, dream vacations and even basics like groceries and clothes for the kids. According to a recent HICOR study, people diagnosed with cancer are over two-and-a-half times more likely to declare bankruptcy than those without cancer.
But spending more and more on treatment, medication and other services doesn’t always translate to better outcomes or longer lives. HICOR wants to help put an end to the crippling financial toxicity of cancer care by helping patients get better bang for their cancer buck.
Painting a picture of patient experiences
Toward that end, HICOR investigators asked stakeholders at last year’s meetings to identify a handful of “metrics,” areas where the value of care could be tracked and, hopefully, improved upon. Monday’s summit provided an opportunity for participants to “see the fruits of their labor,” Ramsey said, and then brainstorm solutions to bump up the value and bring down the costs.
Following a keynote address by Dr. Arnold Milstein, director of a similarly focused organization, the Stanford Clinical Excellence Research Center, Ramsey and HICOR co-director Dr. Gary Lyman presented their data metrics at a poster session.
The metrics, which utilized patient data from Premera and Regence health care claims as well as cancer registry data from the Fred Hutch-based Cancer Surveillance System (CSS), helped to paint a picture of a variety of patient experiences in Washington state, from the use of advanced imaging like CT and PET scans for breast surveillance to treatment-related ER visits and hospitalizations to advanced imaging, cancer therapy and hospitalizations at end-of-life.
But within the colorful graphs and pie charts lay a host of poignant scenarios and tragic tales: patients forced to go to hospital emergency rooms for care because they were unable to reach their doctors; dying patients who undergo invasive procedures and therapies that bankrupt their families but fail to extend their lives; early stage breast cancer patients who suffer a raft of unnecessary scans and procedures after receiving a misleading tumor-marker test.
About 34 percent of patients, HICOR found, die in the hospital, as opposed to dying at home or in hospice care. And nearly 50 percent of dying patients are subject to advanced imaging – tests like MRI, PET and CT scans – which can jack up medical bills without prolonging life.
HICOR’s mission is to reduce this type of human and financial burden.
Brainstorming solutions
After reviewing the metrics, participants broke into groups to brainstorm potential strategies – or interventions – that might be used to improve quality of care and reduce inappropriate medical measures and their related costs.
“We want to have representation from each of the stakeholders – patients, providers, health systems and payers,” said Lyman, a health economist and breast cancer clinician, as he introduced the breakout session on advanced imaging and tumor-marker tests for patients with stage 1 and stage 2 breast cancer. “It’s important to get the input, ideas and engagement of each of you.”
Ideas presented at the breast surveillance session included providing opportunities for patient-to-patient support so breast cancer survivors further down the road can help their peers understand what’s normal after treatment and avoid “panic mode”; offering improved financial transparency so both doctors and patients know the costs of certain tests; creating videos to better inform patients and doctors about appropriate testing; and using personalized survivorship care plans to educate both patients and primary care physicians regarding what imaging and blood tests should be used when.
But attendees also pointed out that neither cancer surveillance nor cancer treatment is one-size-fits-all. Some patients – such as those with triple-negative breast cancer – warrant more intensive surveillance based on their particular tumor features.
“If there’s a perceived higher risk due to tumor biology or other factors, it would be nice to know,” said Leigh Pate, a 48-year-old Seattle consultant and breast cancer survivor.
Top ideas from all the breakout sessions, including those on unplanned hospital and ER utilization during treatment and end-of-life hospital use, were presented at the end of the day. Some of the potential solutions, which will be analyzed and discussed in days to come by working groups of patients, providers and others, included:
- Better after-hours access to physicians
- Additional training for care providers regarding end-of-life discussions
- Better dissemination of information regarding hospice care
- Better patient education at diagnosis
- Improved coaching of patients in symptom management
Bumping up patient participation
Participants also learned about a new oncology informatics database tool known as HICOR IQ, which will provide cancer care partners such as Virginia Mason, Swedish Cancer Institute, Overlake Cancer Center and others with updated reporting on trends in oncology as well as guide patients through their cancer care decisions.
Ramsey closed Monday’s session by emphasizing the importance of research to better all aspects of a cancer patient’s care.
“We asked you here today to talk about what we can do and how we can intervene and we’ve come up with some ideas,” he said. “But we have to test those ideas. We believe as part of the Fred Hutchinson Cancer Research Center that interventions in cancer delivery deserve the same degree of scientific rigor as other interventions in cancer care, like drugs and devices.“
He also stressed the need for additional patient engagement.
“We’re always looking for patient voice and that’s a big goal for us as we move forward,” he said. “We want to make sure this is accessible to everyone.”
Pate, who was attending the summit for the first time, said she was glad she’d joined the HICOR conversation.
“It’s important for patients to participate in these conversations just to remind people that there are humans behind the dollars,” she said. “That alone makes it important to show up and speak out.”
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 also writes the breast cancer blog doublewhammied.com. Reach her at dmapes@fredhutch.org.
Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.
