Patient navigators lead the way through a complex medical world

Tanda Medley, a licensed practical nurse with a warm smile and calm demeanor, has a job title you're likely to see a lot more often in coming years, especially if you have a serious illness like cancer or heart disease.

She's a patient navigator.

She helps patients hospitalized at Albert Einstein Medical Center for heart failure get everything they need when they're discharged so that they don't come right back again. In a job that crosses many traditional boundaries, she teaches patients about their hearts and their insurance, listens to their troubles, makes doctors' appointments, arranges rides to the doctor, and finds ways to pay for their medicines.

Other navigators in the region perform similar tasks while coordinating appointments among the surgeons, oncologists, and radiation oncologists who care for a typical cancer patient.

Mary Rooney, who starts working with women at Crozer-Chester Medical Center when they have abnormal mammograms, said people with cancer suddenly find themselves "in a country where you don't know the language. . . . Once the doctor says you need a biopsy, people kind of go blank." They need help.

The very existence of these navigators is evidence of a health-care system gone a little mad, but experts don't foresee a cure for that. Even if the system got simpler - an unlikely prospect - the human body is complex, and medical treatments increasingly involve multiple specialists and tailored treatments. Hospitals and insurers are figuring out that it's too much for many patients to keep straight, especially while anxiety is blowing circuits in their brains.

"It seems to be the big thing in cancer, and it's all over the country," said Margaret Rummel, a cancer-network administrator at the Penn Cancer Network. "Everybody I talk to is looking to develop programs."

The University of Pennsylvania Health System has had employees doing patient navigation for a decade, but the role has taken off in its cancer network of 13 community hospitals in the last couple of years. Rummel estimated it now has up to 15 navigators.

Fox Chase Cancer Center has been a leader in encouraging navigation among its partner hospitals in the suburbs, but has only recently added employees with that title to work with its own breast-cancer and head-and-neck-cancer patients. Chester County Hospital has radio ads touting its new heart-disease navigator and sees the position as a marketing plus.

Oncology nurses and social workers this spring issued a joint statement on the nascent job category. The American College of Surgeons, which accredits cancer programs, has required navigation in breast-cancer centers since 2008 and will require it for other cancers in 2012. Health-care reform likely will encourage more care coordination because of its potential to increase efficiency and reduce duplication of effort.

On a recent afternoon, Medley leaned toward patient Robina Barnes, who had a case of laryngitis so severe her high-pitched whisper was barely audible from the foot of the bed. Barnes, 80, had fallen in her apartment a few blocks from Einstein, hitting her head on an exercise bar. She didn't remember the fall and was afraid to look at the resulting damage: a badly bruised right eye. Doctors were trying to figure out why she had fallen. She had heart failure, but hadn't seen a cardiologist for years.

Medley had already seen Barnes once, but worried that her patient didn't remember. "I think practice makes perfect," she said. "The more that I talk to them, the more will sink in."

So Medley told Barnes again about the dangers of pizza and Chinese food (too much salt) and the need to watch for even small weight changes. She explained heart failure and said doctors would try new drugs for Barnes' high blood pressure. "I have so many pills, I lose track of what I'm taking," Barnes said. Medley told Barnes she'd made an appointment with a cardiologist and arranged for transportation to get there. Barnes was worried about money, and Medley said she'd try to get her into free programs. She calls patients several times after they leave to make sure they make it to the doctor.

"It was a pleasure, Ms. Robina," Medley said as she left. "I'll be calling you, all right?"

Navigation began in the early 1990s in Harlem as a way to reduce medical disparities. Sometimes poorer patients would ignore test results, then show up at the hospital months or years later with advanced cancer. Lay navigators helped patients get care quickly.

Einstein just got a grant to hire three lay navigators in cancer and is applying for another that would fund lay navigators for patients with diabetes and high blood pressure. "We could probably use 50 navigators," said Cindy McGlone, Einstein's vice president, health-care service. "If we really want to impact the health of our community, that's what we need to do."

Lately, though, it has become more common for hospitals to give the job to nurses and social workers, who can provide more complex education and have long served as patient guides. While navigator is the big buzzword, some hospitals call people who do similar work care coordinators or case managers. Penn calls its navigators patient-support specialists. The programs vary widely.

"If you've seen one nurse-navigator program, you've seen one nurse-navigator program," said Bob Gift, director of operations improvement for Chadds Ford-based IMA Consulting.

Medley's job sounds a lot like disease management, a way of targeting medical resources to patients with expensive, chronic illnesses. Lillie Shockney, a Johns Hopkins nurse who has written a new book on breast-cancer navigation, said today's nurse navigation has its roots in utilization management, which insurers used to get their subscribers out of hospitals more quickly. Hospitals countered with managers of their own, and the role evolved. "To some degree, it's the same song, fifth verse," Shockney said.

In her hospital, navigators will go to doctors' visits with patients and talk about what happened afterward. At some competitors, she said, a navigator does little more than arrange the first appointment.

Insurance companies also have employees who work with patients with the most serious illnesses. In Baltimore, Shockney said, some are called navigators. Locally, Independence Blue Cross has health coaches and case or care managers.

Esther Nash, the insurer's senior medical director, clinical programs support and consumer engagement, conceded that all these guides are a "giant Band-Aid" for a system that doesn't work well, but says it's what patients need. "I say all of it is really a giant symptom of a health-care system that is too costly and too complex," she said. "We understand that."

Gift says he thinks hospital navigators show that hospitals are doing a better job of thinking like patients. Up till now, he said, they "have focused on making the system work for the provider. They don't necessarily work well for the patient."

Patient surveys put navigation among patients' most desired services, Rummel said. Navigation experts say better patient satisfaction is one of its selling points.

"It's patient satisfaction from the get-go," said Jessie Schol, a breast-cancer nurse navigator at Fox Chase Cancer Center. "They have someone that they can talk to, and they have a person who knows their history and knows their game plan that they can talk to."

Einstein's heart-failure navigation program has reduced the percentage of patients readmitted within 30 days from 15.8 percent in 2008 to 8.9 percent last year. McGlone said Medicaid would not pay if patients come back within two weeks, and Medicare will assess penalties for readmissions within 30 days in 2012.

"In the industry right now, everyone is looking at readmission rates, and it's not in your best interest to have a high readmission rate," she said.

Crozer-Keystone Health System, one of the Fox Chase partners, has nurse navigators for breast, lung, and colon cancer.

The navigators have shortened the time from diagnosis to treatment, said Marie DeStefano, Crozer's administrative director of oncology. She said she believed their community-education efforts increased the number of breast cancers found at an early stage.

Most strikingly, though, the navigators have dramatically increased the number of patients who get treatment at Crozer hospitals after diagnosis. Crozer was losing 12 percent to 14 percent of those patients before. Now all but 1 percent to 2 percent stay for treatment.

"The position really pays for itself," DeStefano said. "We actually get the patients in, get them treated and actually keep them in our health system."

Rooney, one of Crozer's breast-cancer navigators, said her job could be exhausting, but it's worth it. "I leave at the end of the day knowing that I've made a difference for someone," she said, "and that's very fulfilling."