Patients and providers spoke up, health economists got granular and the push for more value-based cancer care lumbered a little further down the path toward progress at the third annual Value in Cancer Care Summit, held Friday in Seattle.
The brainchild of the Hutchinson Institute for Cancer Outcomes Research, or HICOR, the VCC Summit was created to bring together key stakeholders in the oncology community — patients, providers, payers, researchers, policymakers and more. Their aim: discuss then implement innovative ways to reduce cancer’s crippling costs and give patients more bang for their buck.
Dr. Thomas Brown, executive director of Swedish Cancer Institute lauded HICOR’s work and its ability to strategically reach across a range of barriers.
“HICOR is in many ways the ‘Switzerland of health care’,” he said.
Led by directors Dr. Scott Ramsey and Dr. Gary Lyman of Fred Hutchinson Cancer Research Center, HICOR’s mission is to improve the effectiveness of cancer prevention, early detection and treatment in ways that reduce the economic and human burden of a disease expected to impact 2.3 million Americans by 2030.
Friday’s working meeting drew more than 150 participants from across the Pacific Northwest region, all of whom turned their backs on brilliant April 1 sunshine in order to tackle the grim economic realities of current cancer care.
Brainstorming to reduce the burden of cancer
It may have been April Fools’ Day, but cancer’s financial toxicity is no joke.
By 2020, cancer care in the U.S. is projected to cost nearly $175 billion a year, a 40 percent increase from 2010. Unfortunately, that cost is increasingly being borne by patients and their families. According to two HICOR studies, cancer patients are two and a half times more likely to declare bankruptcy than those without cancer. And those who do go bankrupt are nearly 80 percent more likely to die.
At previous summits, stakeholders brainstormed then identified three problem areas: end-of-life care; the surveillance of early stage breast cancer survivors; and hospitalization and emergency department care for patients undergoing treatment. HICOR then recruited physician, patient and health insurance plan volunteers to form three intervention working groups, which met over the course of several months to develop proposals to better serve patients in these areas.
Friday’s summit delved into the gritty details of each group’s suggested interventions via three panel discussions, offering patients, payers, policymakers and others a chance to raise questions and voice concerns.
Dr. Craig Earle of the Ontario Institute for Cancer Research kicked off the day with a keynote about Canada’s comparable efforts to offer patients more value-based care through the creation of a Cancer System Quality Index, or CSQI. Cancer survival rates in Ontario are now among the highest in the world, thanks to CSQI’s ability to identify gaps in the system and drive improvement.
“If you can’t measure it, you can’t manage it,” said Earle, a medical oncologist and health economist, succinctly summing up HICOR’s guiding framework: using metrics to measure and improve cancer care.
‘What matters to you?’
The first intervention working group, represented by a panel of providers, payers and patient advocate Janet Freeman-Daily, was tasked with coming up with ways to improve the quality of care for patients at the end of their lives — a time when many cancer patients are put through costly, invasive and pointless therapies by oncologists who are, as one panel member put it, “trained to treat.”
Their intervention focused on the active promotion of “goals of care discussions,” conversations between doctors and their patients that clearly communicate prognosis and clarify what’s truly important to the patient.
“Lots of studies show that many patients are unaware of their diagnosis or their prognosis,” said Dr. Bruce Smith, executive medical director of Regence BlueShield of Washington, who co-chaired the panel with Brown. ”Many patients are confused about the intent of their treatment and a lot of providers are reluctant to talk about prognosis, thinking that if we tell patients what their survival likelihood may be that may take away hope.
“But it turns out patients would really like to know their prognosis in an honest and empathetic discussion of what the reality is,” he said. “And we know these conversations aren’t happening often enough.”
According to the panel, studies have shown that people who’ve had “goals of care” discussions have a higher quality of life, a reduced use of non-helpful treatment and a higher use of beneficial treatment. Patients who receive “goal-directed care” also live longer than those who don’t and bereavement is less severe for the families.
“One of the problems with having this conversation — from the patient side — is that, often, the providers start it by saying, ‘How do you want to be remembered?’” said patient advocate Freeman-Daily. “That sends up all sorts of red flags. The patient thinks you’re giving up on [them]. We’re trying to encourage providers to start with ‘What matters to you?’ That’s valid whether the person is at end of life or in active treatment.
“We all need to be thinking about what’s important to us in our care and what we value,” she continued. “A patient might find that the most important thing for them is to be around for their small children or it might be that they just want to make it to their best friend’s wedding. By starting this conversation with ‘What matters to you,’ you’re getting the patient to talk about issues that will help you decide on treatment as well as end of life.”
Other recommendations included promoting the correct use of new reimbursement codes for these conversations (they should now be reimbursed by Medicare and other insurers but confusion about them has bogged the system down), as well as training for clinicians in the proper way to have “goals of care” conversations since many doctors, as one audience member put it, “suck at having emotional conversations.”
Identifying a breast cancer care gap
The second working group tackled the problem of unnecessary advanced imaging and tumor marker tests in asymptomatic, early-stage breast cancer survivors. One major driver of these tests, the group determined, was the fear and anxiety survivors feel after they finish a very structured treatment program and enter what Seattle oncologist and panel co-chair Dr. Rick McGee described as a “sea of chaos.”
“There’s a disconnect that occurs when active adjuvant therapy is done,” he said. “Patients often feel abandoned.”
They may be asymptomatic as far as a cancer recurrence goes, but they’re hardly symptom-free. As patient advocate and group member Leigh Pate put it, “The body has become a mystery of weird symptoms and changes. Not knowing why your body is having pain or doing the crazy things it is doing leads to patient anxiety, especially when you don’t know why something hurts or doesn’t work the way it used to work.”
As a result, patients — and/or their doctors — may push for tumor marker tests or advanced imaging tests such as PET scans, CT scans, bone scans or MRIs in order to reassure themselves post-treatment symptoms have nothing to do with cancer’s return.
Their suggested intervention: implementing a comprehensive, post-active-treatment care program to address the needs of patients and involving primary care physicians (PCPs) more closely in that plan.
While survivorship plans are being used more and more, they’re not enough on their own, said panel co-chair Dr. Sibel Blau of Northwest Medical Specialties.
“Both patients and doctors need to be educated as to what surveillance means to them,” she said. “There’s a lot of panic and when treatment ends, there’s even more panic: ‘What’s going to happen to me?’ Filling out the [survivorship plan] forms is not enough. You really have to [approach] this as very active education.”
Patient advocate and panel member Courtney Preusse agreed.
“Survivorship care plans, while useful, aren’t enough,” she said. “Research and evidence are beginning to point to the need for more interaction with the patient community and patient partnerships in clinical care.”
Toward that end, the group suggested a number of additional interventions, including the use of social media and patient-to-patient mentorship to help survivors figure out, as one patient put it, “what you need to freak out about and what you don’t.”
“There may be a lot of resources around but they’re not well organized and they’re not well coordinated,” said McGee. “A lot of people are falling through the gap.”
Avoiding hospitalizations during cancer treatment
The third working group presented ideas on how to reduce avoidable emergency room visits and hospitalizations since, as HICOR data revealed, many of these visits may very well be preventable.
“Pain seems to be a really big driver of emergency department utilization,” said Dr. John Rieke, a Tacoma radiation oncologist who co-chaired the panel with Dr. Ted Conklin of Premera Blue Cross.
Ideas included the creation of better symptom self-management tools for patients (such as assessing pain and pain medication before the start of a weekend); creating a centralized “tele-resource” line for patients where oncology-trained staff would both take calls and proactively reach out to patients at key time points (such as three days post-chemotherapy) and extending clinic hours to evenings and weekends.
“[Patients need to know] that if during the entire week, their pain was a ‘7,’ that’s not OK,” said panel member Dr. Renato Martins, an oncologist with Seattle Cancer Care Alliance, Fred Hutch’s treatment arm. “Because on Saturday, it’s going to turn into a ‘9’ and they’re going to end up in the emergency room. We need to inform people what the triggers are and [when they need] to get in touch with us quickly.”
The panel also floated the idea of a shared, regional cancer-specific urgent-care system.
“For smaller oncology clinics not attached to a hospital, sometimes the ER is what they can do,” said metastatic breast cancer patient Beth Caldwell. “I like the idea of an urgent care regional system so patients can go some place that isn’t the ER. No one wants to be in the ER. That’s a terrible, awful experience, always. Having an urgent care clinic that specializes in oncology is a great idea.”
Tough questions and next steps
Some of the summit’s hardest questions came during a panel discussion on the bioethical implications of introducing value discussions into patient care, featuring University of Washington bioethicist Dr. Wylie Burke.
“Why are [cancer drugs] so expensive?” patient Caldwell asked during that Q&A. “Is it acceptable or moral for a company to be charging this amount of money to a patient? If costs were lower we wouldn’t need to have these discussions.”
Breast cancer patient and advocate Bridgette Hempstead, founder of the patient advocacy group Cierra Sisters, brought up access.
“There are members of the African-American community and the underserved community who are told ‘You’re stage 4, go home and make your plans,’ when there are other options available,” said Hempstead. “Unfortunately, they’re not available to my community.”
Freeman-Daily, who moderates the #LCSM (lung cancer social media) tweetchat, talked about online and social media cancer communities and how they can add to value-based care conversations.
“[There are] people across the health care continuum — researchers, health care providers, caregivers, patients — and we need to start thinking about engaging those communities. And using that information that’s available to try and improve the system.”
HICOR director Dr. Scott Ramsey wrapped up the day by sharing data about the costs of cancer care at regional clinics. Not surprisingly, there was a lot of variation from clinic to clinic — even when clinics were treating the same mix of cancer patients.
“Cost is only one component of the value equation,” he told the audience. “And it must be considered in the context of outcomes such as survival and patient experience. We want to get to a place where we’re getting high-value care — good outcomes for cost. High-cost care can be good value but it can also be poor value. And low-cost care can be poor value, too. We want to improve care quality and value, which in many cases reduces cost. But our driving focus is on patient outcomes.”
At the close of the event, Ramsey said there was a lot of work ahead as HICOR started to design and implement the suggested interventions, but he was “very happy” with the summit and the patient participation.
“I think this was the best yet,” he said. “We were able to move beyond data to interventions —what we can do about this. And there were great ideas presented. That’s what I love about having the patients here. Patients live it and collectively through their experiences, we learn. ”
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 and patient advocate, she writes the breast cancer blog doublewhammied.com and tweets @double_whammied. Reach her at firstname.lastname@example.org.