Terrill Jordan, LLM, JD, president and CEO of Regional Cancer Care Associates (RCCA), a multistate practice with clinics across New Jersey, Connecticut, and Maryland, described the mind-set when he joined oncology care administration more than a decade ago. Although immunotherapy promised to save lives, the focus then was all about drugs.
“There was really no definition of what ‘quality’ meant,” said Jordan, as he opened the first 2023 session of the Institute for Value-Based Medicine®, titled, “Innovations and Quality in Oncology Care.” Everything then was centered on the oncologists, he recalled, and the “mission” was to find a cure, no matter what patients endured or “no matter how miserable they may feel.”
Thankfully, times have changed.
Jordan and Iuliana Shapira, MD, chief medical officer at RCCA, joined The American Journal of Managed Care® on January 18 at the Heldrich Hotel in New Brunswick, New Jersey, to present speakers offering a different vision of cancer care: One centered on patients, with the realization that what happens beyond the hospital walls—often driven by social determinants of health (SDOH)—plays a huge role in both outcomes and quality of life.
Quality, Jordan said, “has become much more significant than we thought it was,” and that includes developing the nurse navigator role, a specialty that has become a discipline. Equally important is recognizing the role of the home caregiver, who is essential to a patient’s survival and yet has often been taken for granted. “Someone is holding their hand besides the navigator, besides our clinic staff,” he said.
At long last, the movement toward quality measurement means the tasks that fell “in the middle of everything else” are finally being recognized, tracked, and measured—including how well practices are doing with navigation, addressing health equity, and supporting caregivers, he noted.
“If you don’t take stock of it, if you don’t measure it—it probably doesn’t get enough attention,” Jordan said. “So now we are in the world of paying attention.”
Resolving Barriers With Nonclinical Navigators
Edward E. Partridge, MD, director emeritus of the O’Neal Comprehensive Cancer Center at the University of Alabama Birmingham (UAB), has been studying the use of nonclinical staff for cancer care navigation for more than 30 years—or, as fellow speaker Bobby Green, MD, MSCE, would later share, “before it was even cool.”
Today, Partridge is chief medical officer at Guideway Care, which has a mission to resolve patient barriers to quality care within oncology practices and across the health system. Throughout his career, Partridge has paid particular attention to minority patient populations that historically lacked access to health care. Many of the models developed at UAB succeeded by training nonclinical navigators who had the same background as the patients.
Partridge outlined a remarkable list of success stories with colleagues in the Deep South Network for Cancer Control. Through community partnerships, the network promoted cancer screening in counties in the Mississippi Delta and Alabama’s “Black Belt,” a region named for its rich soil and that was historically known for plantation agriculture1:
A program that recruited and trained 183 women (the majority were Black women) from underserved areas of Alabama and Mississippi to promote breast and cervical cancer screening eliminated a 17% differential in mammography between White and Black women across both states.2
A follow-up program involved trained lay navigators who helped patients with cancer from rural areas get to oncology appointments in urban cancer centers. Patients made it to 1286 of 1384 appointments, a success rate of 93%, “which is really remarkable,” Partridge said.3
UAB trained Black women to serve as lay navigators for patients in clinical trials. In northern Alabama, fewer than 10% of trial participants were Black. The UAB program was able to enroll 80% of eligible patients in a trial.4
In 2011, with funds from the then-new Center for Medicare and Medicaid Innovation, the 12-hospital network showed how a lay navigation system led to a 29% decrease in emergency department visits, a 55% drop in hospitalizations, and a 60% decrease in admissions to the intensive care unit, compared with matched controls. “That was a $57 million savings to Medicare over a 3-year period,” Partridge said.
From these results, Guideway Care was born. “Our administration at UAB decided this was a program that would probably be needed by other health systems,” drawing interest from health care institutions and payers alike, Partridge said. Today, Guideway Care has more than 200 clients overseeing 45,000 patients. It reports a 98% resolution rate in overcoming patient barriers, and Guideway also has 110 million data points on SDOH, he said.
What Constitutes a Patient Barrier?
Echoing Jordan’s earlier comments, Partridge said these are problems that occur “outside the 4 walls of the hospital or clinic.”
“In fact,” he said, “we’ve gotten so good with our care, the quality of care given within the hospitals and the clinic is pretty uniform. And you would expect since it is uniform [that] there would be equal outcomes, but we don’t have equal outcomes. We don’t have equal outcomes because life is messy outside the walls of the hospital.”
SDOH drive the differences, and this can be overcome by “marrying technology with humans,” he said, although the challenge right now is that traditional electronic health records contain little about SDOH. The value shown in the data Partridge has gathered over his career demonstrate difference a nonclinical navigator can make.
Partners—whether they are payers, hospitals, or practices—can work together to achieve health equity by understanding the points of where barriers occur, or “domains.” These domains are practical, informational, emotional, familial, physical, and spiritual/cultural. Guideway uses protocols to help identify the domains where barriers are likely to happen, so that problems are flagged and navigators can resolve them before readmissions occur.
The company uses “care guides” who help overcome the barriers—many of which involve transportation. Patients with cancer have many issues, “but we would call it a barrier if they asked the navigator to help them resolve it,” Partridge said.
Getting patients to their first appointment is an important step, and it is an indicator of savings down the line. In one Medicare Advantage program, there was a 29% drop in acute care utilization compared with patients who had no navigation help; the result was savings of $119,000 a month for high-risk patients, or a 3:1 return on investment.
A key point, Partridge said, is that the care guides are nonclinical staff and need not be costly. If they are well trained and have technology to back up decision-making, they can help patients solve many problems. “It’s just as effective as it was when I was in the research program—and I’m not surprised that it’s effective because it’s addressing a real need,” he said. “It’s amazing to me that every institution or health care delivery chain does not have navigation as part of its delivery.”
Virtual Support for Family Caregivers
Eric Rackow, MD, spent most of his career in academic medicine and candidly admitted he was not that focused on what happened outside the hospital. But then he spent nearly 8 years as chief medical officer and then president of New York University Hospitals Center, and his worldview changed. The needs of patients with a chronic disease and those who needed care at home were now his problem.
“I was trying to think of ways to break the cycle of those ‘frequent fliers’ coming in and out of the hospital,” Rackow said. “And one thing I recognized was that the health care team not only didn’t have navigation, but the family caregiver was not included in the way physicians and nurses in the health care system thought about how to how to promote better patient care.”
Family caregivers, he said, are the great unsupported workforce of the system. A 2020 study estimated their labor represents the equivalent of a $600 billion workforce,5 yet the health system has done little to meet their needs.
So, Rackow said, “I cofounded a company, eFamilyCare, that is dedicated to supporting family caregivers and also using digital health.” The company’s proprietary app allows virtual communication with and assistance for caregivers.
According to the National Cancer Institute, he said, most family caregiving is for patients with cancer. Data from the National Cancer Institute show the following:6
- These caregivers experience a high degree of stress, and the COVID-19 pandemic did not help.
- There are 53 million caregivers in the United States, with most taking care of an older patient.
- Approximately 50% are employed, with 70% reporting that caregiving impacts their work life.
- After a patient is discharged, 46% of family caregivers were not asked what help they needed; 40% wanted help making end-of-life decisions.
Rackow said a study in Journal of Oncology Practice identified 4 basic steps in assessing caregiver needs: assess caregiver needs using measures, educate the caregivers about the tasks they face, proactively assist caregivers, and empower caregivers to be part of the care team.7
Technology, he said, can help with all these steps and make them scalable. The eFamilyCare app can connect the family caregiver with a social worker; it can be used through a mobile phone or a browser.
Rackow noted that much of the support the caregivers receive is not medical. “We are particularly focused on high-cost, high-risk patients and especially those who are underserved. So we’d like to work with health plans and providers that support Medicaid patients,” he said, noting that the share of patients now covered by managed care plans has skyrocketed due to the pandemic, and these patients often need more resources.
To better manage patient needs, he said, eFamilyCare has 4 categories of needs it asks its care advisers to cover, based on a framework developed by the Hartford Foundation. What matters to the patient, regarding goals and preferences? Are medications being taken as prescribed? Is the patient mobile? How is the patient’s mentation—is the patient experiencing depression or worsening dementia?
Typically, assessments of environmental and nutritional factors are comparatively easy. “The toughest one is the financial factor,” Rackow said.
Catching Cancer Early With a Blood Test
For most of his career, Whitney Jones, MD, saw patients with difficult-to-treat cancers, located in the areas such as the pancreas, esophagus, or bile ducts. In 2003, Jones says he had a “light bulb moment,” when in a single week he saw 3 patients—all of whom had insurance—who had metastatic colorectal cancer obstructing the biliary tree.
“All of them were well beyond the age of screening,” he said, and yet none had been. From then on, Jones dedicated himself to promoting cancer screening. From his base in Louisville, Kentucky, he worked with other physicians and saw the state’s screening rates improve considerably.
Single-disease screening—usually for breast, prostate, or colorectal cancer—has been credited as a factor in the huge drop in cancer deaths over the past 30 years.9 But hunting for 1 cancer at a time only goes so far. Being able to screen for multiple cancers—all at once, with a single blood test—would not only be more efficient, but it would also catch cancers that otherwise might not be found until they were at an advanced stage.
This possibility is what brought Jones to GRAIL, where he serves as a senior medical adviser. GRAIL’s Galleri test, which is now being marketed to employers, has not been cleared by FDA but is regulated by the Clinical Laboratory Improvement Act, which means doctors can order it.10
The Galleri test works by detecting cell-free DNA in the blood. Although the test available on the market cannot detect all cancers, it can detect 50 common cancers, including the 12 cancers responsible for nearly 70% of cancer deaths. The test on the market detects cancer with a false-positive rate of 0.5%. Once cancer is detected, the test can identify which organ system is involved with 90% accuracy, according to a review by Cleveland Clinic.11 From there, a patient would undergo additional testing to pinpoint the presence of cancer.
Although the test doesn’t cover all cancers, Jones said when used in tandem with current screening tools, it offers more opportunity to catch cancer early when chances of a cure are higher. “We screen for about 30% of cancers, and our detection rates are only 60%. So, 84% of cancers are diagnosed not through screening, but through symptom presentation,” he said.
And in Jones’ opinion, the woefully low rates of lung cancer screening—and the additional drop-off in screenings during the pandemic—show the need for new methods. A blood test with a turnaround of 10 to 14 days with a high degree of accuracy would be easier to use, he noted.
Is the test for everyone? No, Jones said. Individuals 50 years and older have 13 times relative increased risk of cancer than younger individuals, he said. “Our sweet spot is that 50 to 80 age range,” he said. Other high-risk groups that should consider testing would be young adults who are cancer survivors; those with strong family cancer history or who carry germline mutations; and those with risk factors such as smoking or obesity, HIV/AIDS, or being the recipient of a solid organ transplant.
He emphasized that this is not a minimal residual disease test, which is used to detect the presence of cancer cells in bone marrow after treatment for certain blood cancers. The Galleri test is a repeated test, Jones said, more like a Papanicolaou test, although the recommended testing frequency is still being determined. “So many cancers have long dwell times,” Jones said.
The list price for the test is $949, which Jones said would put its incremental cost-effectiveness ratio (ICER) at around $75,000; an ICER at this level is considered to have “intermediate value.” Jones said it’s likely the cost will be reduced over time as the number of test users increases. His hope is that the test is used among groups at highest risk for cancer. Black men have 3 times the cancer risk as Asian women at baseline, he said. If groups with the greatest risk don’t have access to the test, “we’ve missed the mark.”
Thyme Care: Right Care and Right Technology
Green spent years as a practicing oncologist and technology leader that led to his current role as cofounder, president, and chief medical officer of Thyme Care, which uses technology to connect patients with services and support through their cancer journey. Green shared a scenario of a patient with multiple myeloma and type 2 diabetes, among other comorbidities, who was put on dexamethasone and told to see his primary care physician for insulin adjustments.
“It will surprise no one in this room if I were to tell you that things fell through the cracks,” Green said. The patient ended up in the hospital with elevated glucose levels, something that is likely to happen again if nothing changes.
But with the right navigation, that might not be so. And that’s the point of Thyme Care. A major question with navigation, Green said, has been who pays for these interventions.
“They’re expensive to implement; they’re expensive to do,” he said. A key problem Thyme Care has tackled is the need to combine the right people with the right technology, which creates the ability to scale navigation services and direct help to patients right when they need it, without staff tied to an individual site. The platform becomes the place to go for help, eliminating a barrier when patients need help setting appointments, figuring out how to connect to transportation services, or finding a specialist.
Today, Thyme Care is expanding its footprint in and beyond New Jersey, where it already has partnerships with health plans that cover 300,000 lives at risk; Green said that will increase to approximately 1 million lives at risk by the end of 2023.
“We also partner with clinicians and with oncology practices to help make the navigation better and to try to set up the right financial models—so that when you move the needle in navigating you reduce the cost of care,” Green said. The idea is for everyone in the partnership to share in the reduction in costs. Collecting data points helps fine tune targeted interventions while incorporating SDOH.
It’s working, Green said. “We’ve had some encouraging results. We’ve seen a reduction in the total cost of care,” he said, displaying findings shared at the American Society of Clinical Oncology Quality Symposium in September 2022.12 The data show significant drops in inpatient stays and some movement of patients into hospice at earlier points in the care journey.
“At the same time,” Green said, “using a virtual platform, we’re really having a good ability to engage patients, which was an important proof point for us.”
Engagement with practices is especially important, based on Green’s experience. Lack of knowledge of oncology practices and lack of integration are 2 things that can doom the uptake of technology, so understanding how Thyme Care’s software fits with workflows is a priority, he said. Keeping oncologists in the loop and primary care interactions are items “that we’ve heard over and over again.”
“That patient’s story is just one example of somebody who falls through the cracks,” he said.
When it comes to understanding patient needs, being able to engage with multichannel communication, reaching patients at the right time in the right way, and being proactive are all vital to making navigation technology effective.
To aid practices, the technology provider must answer these questions: What can be done about information overload? What about collection of patient-reported outcomes? Are rules and systems built in to differentiate between levels of patient need?
“This is one of the concerns that we’ve heard, especially when people start thinking about the Enhancing Oncology Model, where SDOH assessments are going to be required,” Green said. “I hear over and over again, ‘I don’t want to ask a question if I can’t do anything about it.’”
Technology must not only identify which patients have transportation issues or food insecurity, but it also must be able to help navigators and practices connect with local resources that can meet these needs, perhaps by aggregating community-based organizations, he said. This can prevent nurses from performing these tasks and enables nonclinical staff from spending too much time on them. Finally, all of this must be integrated into existing management workflows, so users aren’t logging in and out of another platform, Green noted.
Green offered an update on the patient with multiple myeloma and diabetes after Thyme Care became involved. Because the system showed that the patient spoke Spanish, the call that went out to him was in Spanish. The caregiver learned he was making up his insulin doses because he had no way to properly dose his insulin. The caregiver shared the information among all the physicians involved and ensured that the hospital discharge nurse was in the loop.
“It’s been about 2 months, and that patient hasn’t been back to the hospital,” Green said. “I’d consider that a win.”
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