In a Byzantine health system, navigators help at-risk patients find their way

CHELSEA, Mass. — Ms. P needed a colonoscopy. She’d been losing weight and had noticed blood in her stool; both are red flags for colon cancer. Yet after her doctor delivered that news, she didn’t book the procedure for weeks.

Ms. P was a recent immigrant from Venezuela and spoke almost no English. Although her primary care doctor and she had a long discussion with the help of an interpreter, it turned out, she was still confused about the importance and meaning of the test, how to make the appointment, and how to arrange transportation to get there.

Even patients who read and speak English fluently face challenges navigating the increasingly Byzantine health care system. But patients who are less well-equipped, whether because of poverty, education level, or cultural barriers, are at a particular disadvantage when it comes to getting the health care they need.

For these patients, seemingly small concerns, such as how and when to make a doctor’s appointment or how to get to the clinic, play an outsize role in their care. For instance, women without the skills to understand and process essential health information — a capacity known as health literacy — are twice as likely to have never received a Pap test and are 50 percent less likely to have had a mammogram in the past two years compared to those with better health literacy.

That’s why a new idea is gaining hold: a kind of medical buddy system.

There are only about 500 so-called patient navigators nationwide, but their visibility is growing. Some come to the job with medical training, but that’s not requisite — just as often the key qualification is a certain language or cultural expertise.

The job is something of a mix of interpreter, community health worker, and social worker. Navigators help patients make and attend appointments, help find resources such as transportation vouchers, and support and advocate for patients in discussions with their doctor or insurer — or even with family members.

These positions are often paid for by the hospital itself or by private foundations, rather than via insurance. That’s one big reason many patient navigators to date have been employed in cancer care, where more funding exists.

Yet the role is not without detractors, who say that despite good intentions, health navigators could make an already large health care team even bigger and more disconnected.

‘A lightbulb went off’

I’ve become familiar with the work of patient navigators in my role as a resident of internal medicine at Massachusetts General Hospital. Patient navigator Joanne Toussaint, who works at MGH’s Chelsea HealthCare Center, has a lot of Spanish-speaking patients; her fluency in the language and experience living in and traveling to Spanish-speaking countries have made her especially adept at serving as an intermediary. For example, a patient who is told that a “light” breakfast is permissible the morning of a test might think this small meal could entail a hefty helping of rice and beans, when in actuality that much food could mean the test has to be cancelled. Toussaint has learned to convey that in advance.

Toussaint recalls one patient, a Somali man, whose doctor had recommended a colonoscopy. The man initially flatly refused the test, and since he did not know how to read or write, that put the brakes on the doctor’s plan to send him home with pamphlets to hopefully change his mind.

Yet sitting alongside the patient and the interpreter, Toussaint saw crucial cultural interpretation in action. The interpreter, searching for an explanation, compared the laxative drink taken to prepare for the test to one commonly imbibed in Somalia. A lightbulb went off, Toussaint said.

“Once we started talking about that drink and how it interacted as you drank it, it really gave the gentleman an understanding of preparing for a colonoscopy because he could contextualize it and relate to it,” she said.

The interpreter drew pictures to explain when throughout the day the patient should drink the laxative. The patient took those home with him, and pledged to be back for the test later that week.

Research has shown that attention to these kinds of details can make a real difference in health outcomes. A recent study looked at patients at Mass. General clinics who were on the fringes of the medical system either because they didn’t speak English, had missed a recent appointment, or were overdue for at least one routine cancer screening. Half of the 1,600 patients were assigned a navigator. At the end of the eight-month trial, those patients were nearly twice as likely to have had a cancer screening test as those without a navigator, the clinicians found.

An expensive solution

As of 2003, more than 200 US cancer care programs had navigators in place; experts estimate that number is now close to 500. And patient navigator programs are required at all 30 medical centers funded by the National Cancer Institute’s Community Cancer Centers Program.

Outside of cancer medicine, however, navigators have been slower to catch on, said Sima Kahn, president of the National Association of Healthcare Advocacy Consultants and a former obstetrician-gynecologist who now works as a patient navigator.

Kahn sees her new profession as an outgrowth of her old one — with a greater focus on patient advocacy. “Nurses and doctors have been advocating for family members our whole careers, and it was a piece I felt was getting cut out of medical care more and more.”

Still, the concept has its critics. For one thing, navigators are expensive. It’s estimated that roughly 1,000 patients would need to be assigned health navigators to save a single life from cancer — and that costs valuable health care dollars.

Another concern is that as more specialists and subspecialists join a patient’s medical team, navigators may risk complicating the system rather than simplifying it.

For instance, a navigator may be mistaken for a medical professional by patients or family members. In those instances, “the person they ask has to be able to say, ‘I really don’t know the answer to that, but I will do my best to find out for you,’” said Carol Levine, director of the families and health care project at the United Hospital Fund in New York. “It’s about acknowledging that it’s a hard question and that the right person needs to answer it.”

Learning to navigate

In many navigator success stories, the end goal is to become obsolete. With time, “patients become empowered and responsible for their own care,” Toussaint said.

She remembers one patient who struggled to get radiation treatment for her breast cancer.

The patient, who was originally from Honduras, spoke no English. Every week, Toussaint met with her to discuss the crucial logistics of her care, from how she would fit her daily treatments in alongside full-time work, to the best way to get to the cancer clinic.

“I went to an appointment or two with her so she felt comfortable with how to get there,” Toussaint said. Together, they took the hospital shuttle from the community clinic to the cancer center, and Toussaint showed her how to find her doctor’s building and floor. Toussaint arranged door-to-door transportation to her appointments, and with a hospital social worker, finagled grocery coupons to offset the cost of travel. When the patient got lost or had questions about the timing of her ride, Toussaint was on the phone with her. Ultimately, the woman finished the full regimen of radiation treatment without missing a single session.

Since then, Toussaint said, the patient has done well.

“We are there to get them through, and they appreciate our help, but eventually they do not need us anymore.”