In the 71 days since she first saw her doctor about a suspicious lump in her right breast, Ricki Harvey has had 40 appointments about her medical care. First came the mammogram, the ultrasound and the biopsy. Then meetings with the surgical oncologist, the radiation oncologist, the general oncologist, the social worker, the geneticist and the physical therapist. Then her twice-weekly chemotherapy infusions.
At Harvey’s side every step of the way were “patient navigators” — in her case, nurses — whose job is to help guide cancer patients through a system that has become so complex and fragmented that it is beyond the ken of many people, especially at such a vulnerable time.
Many patients rave about them, calling them a godsend. “Some people have to do this all on their own,” said Harvey, 65, a retired elementary school principal from McLean, Va. “I can’t even imagine.”
Yet so far, research shows that, with the possible exception of poor people who typically don’t receive sufficient medical care, navigators have only a modest effect on how well patients do. There is little evidence that they save money. And research on patient satisfaction is mixed.
Those findings have relevance as the health-care system moves from a fee-for-service model to one that rewards high-quality care. Doctors and hospitals are under growing pressure to rein in costs and show that every new initiative has value. But value can be subjective and difficult to measure. Are navigators, for example, a nice add-on service that merely reassures patients, or do they contribute much more?
“I think for a lot of patients, maybe even the majority of patients with cancer, navigation may not have that big an impact on the kind of care they get,” said Scott Ramsey, a professor of public health sciences at the Fred Hutchinson Cancer Research Center in Seattle, who studied the cost-effectiveness of navigators in a large National Cancer Institute project.
Supporters of patient navigators say common sense argues that the programs save money and improve care, even if research has not proved their full worth.
Patients save money because they get help deciphering their bills, along with information on government and private programs that help pay costs, said Mandi Pratt-Chapman, director of the George Washington University Cancer Institute.
Clinicians and hospitals save money because no-shows are reduced, treatment regimens are followed, problems are detected earlier and visits to emergency rooms decline, added Pratt-Chapman, who oversees the cancer center’s patient navigation team.
“I think it’s a matter of how you want to define value,” said Lillie Shockney, who runs the team of four nurse navigators at the Johns Hopkins Breast Center, where Harvey receives most of her care. “We can make sure we’re giving this patient the best opportunity of survival with quality of life. What’s the value of that? To the patient, it’s huge.”
For one patient in the National Cancer Institute study who had rectal bleeding, for example, the determined efforts of a navigator finally persuaded him to show up for a colonoscopy, one researcher recalled. Physicians found a large growth that probably would have turned cancerous; its removal saved perhaps $100,000 in cancer care, not to mention the patient’s health, she said.
“We prevented a cancer there,” said Electra Paskett, associate director of population sciences in the Comprehensive Cancer Center at Ohio State University.
There are now thousands of navigators at cancer centers and other medical facilities across the country. No one really knows how many, but their professional organization, the Academy of Oncology Nurse and Patient Navigators, founded by Shockney in 2010, has 5,000 members.
They include nurses with clinical skills, lay people and even volunteers who help patients overcome obstacles to care. Those include paying their bills, finding transportation, arranging child care, making appointments, taking sick leave and responding to emotional fallout. After costs, transportation to medical appointments is the top barrier to good care, several experts said.
The programs have been proliferating; since Jan. 1, they have been required for cancer centers seeking accreditation by the American College of Surgeons.
The idea was pioneered in 1990 by Harold P. Freeman, a doctor at Harlem Hospital who realized that his largely poor and uninsured patients were not receiving quality cancer care because they often got lost in the disjointed system. The programs spread to cancer centers across the United States, as well as some treatment facilities for a small number of other diseases.
In years past, doctors themselves, nurses, nurse practitioners and even family members handled non-treatment issues for patients. But the ranks of oncologists have thinned, the number of patients has grown and cancer care has become so complex that medical professionals have little time for anything but treatment.
Harvey began her journey through the system in late April at Walter Reed National Military Medical Center in Bethesda, Md., because her husband is a veteran. She was frightened and confused until a nurse navigator there became involved.
“That absolutely was like an angel from heaven,” she recalled. “Thirty minutes after my diagnosis, she called me and told me exactly what was going to happen.”
Harvey later moved to the Johns Hopkins Breast Center, where Mary Capano, a breast cancer survivor, became her navigator. With Medicare coverage, a strong personality, social support and the means to get to her doctors, Harvey mostly needed a problem-solver.
She tried to schedule a test at Sibley Memorial Hospital in the District and was told she’d have to wait 30 days. Capano made some phone calls, and Harvey had an appointment in 24 hours.
“I have a long go-to list,” said Capano, who has been a navigator at Hopkins and elsewhere since 2002. “It’s building up relationships and contacts over time so that people know the nurse navigator or they know my name or they know my reputation or they know my abilities.”
For Anthony Washington, a materials handler at Fort Belvoir, the issue was money. The 58-year-old District resident has small-cell lung cancer that has spread to his brain, forcing early retirement from his $18.70-an-hour job.
With just enough income to cover his rent and expenses, Washington had none left for his co-payments. As he was receiving radiation and chemotherapy at George Washington University’s cancer center, he was fielding phone calls asking for payment.
“They were calling me every day. Every day,” he said. “I was getting frustrated and I was saying, ‘I don’t got no money now.’ ”
Washington’s navigator, Elizabeth Glidden, who works for the cancer center but is partly paid by the American Cancer Society, helped him find a program with his credit union that covers his car payments while he is disabled, freeing money for therapy. Assistance from GWU, his retirement fund and Social Security disability insurance have also eased Washington’s financial burden.
“We all expect these patients to have cancer foremost on their brains,” Glidden said. “But most times, it’s not. It’s everything else.”
The debate over effectiveness and costs centers mostly on the National Cancer Institute’s $30.3 million, nine-site study of patient navigation. With smaller studies showing promise, the agency hired and trained navigators to help 10,521 people with signs of breast, cervical, colorectal or prostate cancer at medical facilities around the United States. Most were minorities, had no insurance or were covered by government programs.
The results, published last year, found no benefit in determining whether the patients had cancer or in initiating their treatment during the first 90 days. But there was a “moderate” benefit in those two outcomes from 90 days to one year for those who had the help of navigators.
Karen Freund, vice chair of the department of medicine at Tufts Medical Center in Boston who supervised the effort, said the research showed clear benefits for the people who need it most — underserved patients who typically “fell through the cracks” of the medical system.
“The results showed a modest benefit,” she said. “There’s still work to be done, but it clearly showed benefit.”
Ramsey and Jeanne Mandelblatt, associate director for population sciences at Georgetown University’s Lombardi Comprehensive Cancer Center, who conducted the cost analysis with him, aren’t convinced. They concluded that navigation added $275 per patient in costs, didn’t speed up the process and “modestly” improved the chances of securing a diagnosis.
“So far, this doesn’t show evidence of effectiveness or cost-effectiveness,” Mandelblatt said, in part because of the way the study was designed.
More recently, University of Alabama at Birmingham researchers looked at their own program, which assigned 42 lay navigators to help 6,743 cancer patients covered by Medicare in five southeastern states. They found that the number of hospitalizations, emergency room visits and admissions to intensive care declined more sharply among people assisted by navigators, as did costs.
Again, however, they could not be sure that patient navigation was the sole reason. Improvements in health-care services and other factors may have played a role, the researchers said.
Gabrielle Rocque, an assistant professor of hematology and oncology at the Birmingham medical school who presented the findings at a recent cancer conference, said the research showed that “navigated patients are really where the substantial reduction in costs has resulted.”
In the end, many say, debating patient navigation may be asking the wrong question. Why not, they wonder, spend the money and energy needed to overhaul the entire cancer-treatment system?
“One question worth asking is why do [patient navigators] exist,” Ramsey said. “And the reason is the cancer community has done a very poor job of helping patients through the system. The fact that navigation exists is kind of an indictment of the cancer-care system.”