Heads up, Washington — your neighborhood may be killing you.
Where a person lives has a big impact on whether they will live following a cancer diagnosis in our state, according to new data released May 13 by researchers at the Hutchinson Institute for Cancer Outcomes Research (HICOR). Your zip code, your race and your proximity to an oncology clinic all can influence the stage of a cancer diagnosis, which in turn influences survival.
“Social determinants like race, socioeconomic status and neighborhood have a big impact on what stage you are when you’re diagnosed,” said HICOR director Dr. Scott Ramsey of Fred Hutchinson Cancer Research Center at the sixth annual Value in Cancer Care Summit held May 13 in Seattle.
“From our own data in our own state, our findings show that these social determinants have an impact on the likelihood of someone being diagnosed at a more advanced stage,” he said.
HICOR’s analysis of cancer registry records and health insurance claims between 2012 and 2017 accounted for about 70% of the state’s residents. It showed those living in the poorest or most disadvantaged neighborhoods were 40% more likely to be diagnosed at regional stage — that is, after a cancer has spread to the lymph nodes. Even worse, these patients were 60% more likely to be diagnosed with metastatic or stage 4 disease, where the cancer has spread to vital organs.
“People who lived in the most disadvantaged neighborhoods fared worse regardless of their type of insurance,” Ramsey said.
Race also put cancer patients at a disadvantage, the HICOR data showed. Black patients had a 20% higher rate of being diagnosed at a regional stage and a 30% higher rate of being diagnosed at distant stage than whites. Asian patients also tended to have later diagnoses compared to whites, Ramsey said.
“This is surely due to barriers of access and other factors,” he said.
The VCC Summit, launched in 2014 by HICOR, Fred Hutch’s health economics group, gathers payers, providers, clinicians, patient advocates and caregivers to hash out research strategies to improve the quality and value of cancer care in the region.
Cancer’s financial toxicity not only bankrupts patients and their families, HICOR research shows that it kills. And it’s expected to continue doing so as cancer care costs and drug prices spiral ever higher and patients are forced to choose between treatment and basics like food and housing.
This year’s meeting drew nearly 200 stakeholders to hear national thought leaders like Dana-Farber’s Dr. Deborah Schrag, an expert in cancer care delivery research; Dr. Christopher Flowers, a former Hutch postdoc now conducting disparities research at Emory University; and Judge Karen A. Overstreet, a retired bankruptcy judge, cancer survivor and HICOR research partner who founded the financial planning nonprofit, CENTS.
Patient voices, too, were a big part of the day with presentations by cancer survivors who, despite ongoing treatments and side effects, were up to their elbows in research initiatives.
Janet Freeman-Daily talked about The ROS1ders, a group of patients and caregivers grappling with cancers driven by ROS1 gene fusions and their project to create ROS1+ cell lines and mouse models. Researcher and angiosarcoma survivor Dr. Corrie Painter, associate director of the Broad Institute’s Count Me In cancer genomics project, presented on its unique and successful patient-centered research model. Brain cancer patient and UW School of Social Work grad student Charlie Blotner shared insights on #BTSM, the brain tumor social media group he co-founded, and how it and other social communities don’t just provide patients with instantaneous support and information, but valuable data for research, too.
“Online patient communities are much more than sending out pictures of what you had for breakfast,” Blotner said. “There’s a paper coming out in the Journal of Palliative Medicine on what quality of life means for people in the brain cancer community. It all started from a tweetchat.”
Dana-Farber’s Schrag presented data on patient-reported outcomes, or PROs, showing that data gathered directly from patients — as opposed to their doctors — led to better symptom reporting and management. Dr. Patricia Deverka, an expert on patient-researcher partnerships, emphasized the need to involve patients from the get-go.
“If you have patients engaged in the design process, you will have more patient participation in the cancer clinical trial,” she said, pointing to evidence from 126 studies that showed no negative impacts from patients being involved in research. “Patient partners are invaluable in boosting enrollment and making research questions relevant."
The VCC focus on patient voices and patient engaged research was new. Not so new, the ever-escalating costs of cancer care.
"Financial toxicity is real,” Overstreet, the retired judge, told the audience. “If you’ve ever had a medical crisis, you know this is true. We need legislative solutions; we need institutional solutions; we need to deal with the high cost of prescription drugs and we need community partnerships. This is an unacceptable circumstance in this country and somehow we have to change it."
Access and cost issues are especially hard on the underinsured, the underserved and those who live in disadvantaged neighborhoods. This was made clear by HICOR’s startling analysis of cancer care disparities in Washington, which drew murmurs from the audience as Ramsey explained the team’s statistical methods, data sources and grim findings.
HICOR used patient data from the Washington State Cancer Surveillance System, housed at Fred Hutch, along with claims data from nearly all of the state’s large commercial and federal insurers, including Medicare/Medicaid, for their analysis. Disadvantaged neighborhood were determined by their ADI, or Area Deprivation Index, a scale that measures socioeconomic status, housing cost and quality and material deprivation.
Again and again, Ramsey said, the Hutch analysis showed that “your situation when you present with cancer, your lifetime experience, your ability to access care — your social determinants — all affect your care and outcomes.”
People living in disadvantaged neighborhoods fared the worst with regard to late diagnosis and cancer survival. These patients also had more Emergency Department visits and inpatient hospital stays during chemotherapy and more ED visits at end of life. Social determinants also affected the type of insurance people had, which in turn, influenced their survival.
“Across all stages of diagnosis, we found that persons with low income insurance have poorer outcomes than those with commercial or Medicare insurance,” Ramsey said. “This is likely due to factors beyond insurance — we found the quality of care is generally high across all insurance plans. Specifically, social determinants of health are most likely responsible for the observed differences, reflecting the fact that our society sorts people to insurance plans based on income, disability, and other factors that strongly influence survival.”
And the more disadvantages patients had, the more their disparities increased.
Patients in rural areas with low-income insurance had worse outcomes even if they were diagnosed with earlier stage disease: Out of every 100 of these patients, 38 were dead three years after diagnosis compared to 32 of every 100 similar patients living in metropolitan areas.
“These are really striking differences in survival, that are perhaps not unexpected,” Ramsey said.
Moving forward, he said, policy makers and others need to factor in social determinants to improve the equity of cancer care. He also encouraged providers, insurers, patients and community partners to advocate for policies that support the most vulnerable patients.
HICOR and Fred Hutch, he said, were “committed to conduct a deeper dive to try and understand what’s going on.”
Patent advocates offered a few clues, describing rushed oncology appointments, confusing medical-speak and distant clinicians who lacked compassion or interest in their patients’ lives or goals.
“When I was diagnosed, I didn’t even know what oncology was,” said Margie Willis, now a patient partner with Endometrial Cancer Action Network for African-Americans (ECANA). “I was like a deer in the headlights and the doctor was just throwing stuff at me. I never want to talk to a doctor like that again.”
Willis and other advocates spoke of patients who’d died because their symptoms were dismissed; patients who were told (incorrectly) they’d have to terminate their pregnancy after a diagnosis; patients who were denied access to clinical trials.
Listening to patients and their concerns — whether through patient-reported outcomes or face-to-face in the exam room — was essential, they stressed. Even more important: including their voices in research.
Dr. Kemi Doll, a UW gynecologic oncologist and health services researcher, traced the history of ECANA, the patient-research partnership she formed to better serve women with endometrial cancer. The mortality rate for this cancer is 55% to 200% higher in blacks than in whites.
“There was a lack of visible community of black endometrial cancer survivors, which was a major barrier to patient-research partnerships,” she said, explaining how the group created a community and built much-needed trust between patients and researchers. “We want those voices at the research table.”
Doll emphasized the need to respect and value those voices, too.
“I get paid a full salary to do this work,” she said. “And it’s really not fair for me to ask women who are survivors of endometrial cancer and dealing with financial toxicity to donate their time. We have radical transparency not just around our research priorities but around compensation and time commitment.”
Painter, of Count Me In, highlighted the necessity for diversity in research.
“We skew young and we skew white, so we hired a full-time employee to focus full time on inclusion,” she said. “There are a lot of things we need to do from a research perspective because there’s a lot of mistrust perpetuated by actions that are still going on today.”
Bridgette Hempstead, founder of the African-American breast cancer support group Cierra Sisters, said research needs to make all patients feel welcome.
“Clinical trials are not always offered to us, and patients are dying as a result of it,” said Hempstead, whose organization runs neighborhood health fairs, trains community health workers and distributes cancer prevention materials throughout the medical deserts of south King and Pierce counties. “I was told by one of my providers — before I fired him — that I would not be allowed to be in a clinical trial.”
But bias — inherent or otherwise — is just the beginning.
Dr. Joe Unger, a Fred Hutch biostatistician with the SWOG Cancer Research Network who’s parsed patients’ lack of participation in cancer trials, said patient-related barriers — that is, patients declining to participate in a clinical trial — have long been overemphasized.
“Clinical and structural barriers actually make trials unavailable to 3 out of 4 cancer patients,” he said.
Eligibility criteria, particularly around additional health issues or comorbidities, are being reviewed and revised by organizations like the American Society of Clinical Oncology and U.S. Food and Drug Administration. But Unger said there is more to do, especially since out-of-pocket expenses (think travel costs, co-pays, parking and childcare) still put trials out of reach, particularly for lower income patients.
“HICOR and SWOG are trying to make trials more patient friendly,” he said. “And one aspect of that is making sure patients can participate without being overly burdened. We’re trying to look at trial participation through the patient lens, rather than the researcher lens.”
At day’s end, VCC participants left with heads abuzz with data and a much better grasp of the state’s health disparities. While daunting, most seem determined to use that data to make a difference.
“We cannot fix what we cannot see, so thank you for all of this work,” one audience member said. “The more we’re able to see deep into what’s happening, the better we are able to fix it.”
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 firstname.lastname@example.org.