In the late 1970s, one cancer surgeon at New York’s Harlem Hospital Center found an ongoing tragedy: Black, poor and uninsured women were coming in with advanced breast cancer.
“The women were dying at such a high rate,” Dr. Harold Freeman recalls. Patients had felt the initial lump often months or years back, but getting screened and biopsied involved long crosstown commutes and bureaucratic thickets. That’s challenging when you’re a single parent, for instance, working long hours to meet survival needs — which somehow, no one in charge had actually considered.
Freeman made it his mission to change that. In 1979, he created two free Harlem-based clinics screening for breast cancer, at a time when fighting stigma around cancer was still new. By the late 1980s, he was serving as president of the American Cancer Society. Freeman traveled around the country to gather information on poverty and cancer. That testimony showed that barriers such as medical jargon, lack of insurance, transportation and job security often blocked people from accessing cancer prevention and treatment.
At Freeman’s own cancer clinics, he reached out to select people who cared about their communities. They didn’t necessarily need prior education in cancer, but compassion and intelligence. A new kind of health professional emerged: patient navigators.
“People didn’t trust the system,” says Freeman, “but when we brought in people who were from the community and spoke the language, problems were solved at a different level when one on one with someone they trust.”
As a result of free screenings and patient navigation, the five-year survival rate at Harlem Hospital Center went from 39 percent to 70 percent. In 1990, Freeman founded the Freeman Patient Navigation Institute to train navigators from across the country and around the world.
Patient navigators and our systems
According to the Academy of Oncology Nurse and Patient Navigators, the patient navigator is a non clinically trained patient point of contact. They provide help with logistical, structural and social needs, along with cultural considerations.
While traditionally, they’ve helped cancer patients navigate the healthcare system, more recently, they have popped up in pediatric care units and other areas of the medical system. Recent national and international research associates patient navigation with improvements in patient engagement, reduced costs, cost effectiveness and follow-up care for strokes, HIV, colonoscopies and more.
As another public health benefit, navigators increase access to screenings and health services for people with chronic conditions who tend to underuse health services. More studies offer promises for the future, such as using patient navigators in postpartum care.
Nurse navigators fit into a slightly different category. They are clinically trained to guide patients from diagnosis through survivorship, often acting as a central point of contact and coordinating care, including with surgical, medical and radiation oncologists. Since 2015, the American College of Surgeons has required patient navigation services as a standard of care for any cancer center seeking ACS approval.
“[Nurse navigators] end up streamlining care,” says Sharon Gentry, program director at AONN. When she first started, women might have to ping-pong between a breast clinic and a hospital to undergo a simple breast biopsy. Some in Gentry’s North Carolina clinic were already traveling from rural Appalachia to receive care, hours away.
“In healthcare, we get so busy in our day-to-day silos, we forget how a patient goes through the system,” Gentry says. As the patient navigator, she could bring the silos together and develop creative solutions, such as a more holistic biopsy process.
If a patient is terrified at the mention of chemotherapy, that fact is something the patient navigator can mention to the physician. “We can give a heads-up to the doctor that they might want to prepare and soften delivery,” Gentry says. “The better we understand the patient, the better they can receive the information.”
A day in the life
At Seattle Cancer Care Alliance, newly diagnosed patients sit for an intake appointment with a navigator, says Anne Devine, an SCCA patient navigator and manager. An assessment discovers any needs: whether someone needs a ride to appointments, financial assistance for co-pays or an eligibility determination for temporary disability.
Devine says that for each 15- to 30-minute phone call, there’s typically another three hours of work between finding resources, sending mail and email or helping the person apply for financial grants and assistance.
Navigators aren’t like counselors, she points out. However, providing information and resources can reduce anxiety for many. “We do a lot of sleuthing after we meet with someone,” Devine says. Thanks to recent grants, although navigators work with all populations, the staff has expanded its culturally competent care with Indigenous, Black and Asian American/Pacific Islander–focused navigators.
Just as in the 1970s, people still worry about taking time off for treatment or job loss, which can lead to money, housing and coverage issues. But navigators are helping to bridge gaps and overcome obstacles. “Society has a lot of inequity, but the greatest inequity of all is inequity in healthcare,” Devine says.