‘Navigators’ guide cancer patients

It’s a growing trend, but treatment value is debated

WASHINGTON — 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 understanding of many people.

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, Virginia. “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 Center in Seattle, who studied the cost-effectiveness of navigators in a large National Cancer Institute project.

Supporters of patient navigators say that common sense argues that the programs save money and improve care, even if research hasn’t yet proven 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 School of Medicine’s 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 with rectal bleeding in the National Cancer Institute study, 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 likely 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 range from nurses to 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.