Navigators guide patients through the continuum

Barriers include language, finance, transportation

When patients are referred to the Ralph Lauren Center for Cancer Care and Prevention in East Harlem, NY, they are met on their initial visit by a patient navigator whose job is to ensure that they receive a timely diagnosis and treatment.

"Poor people encounter significant barriers when they seek diagnosis and treatment of cancer. Until the patient navigator system was instituted, there was nothing in the health care system to guide them through the continuum of care. The majority of them were falling out of the system at the point of a suspicious finding," says Rian Rodriguez, MPH, research coordinator/patient navigation manager.

Ralph Lauren Center for Cancer Care and Prevention is a partnership between Memorial Sloan-Kettering Cancer Center and North General Hospital. Its mission is prevention, diagnosis, and treatment of cancer through new models of patient care, research, education, and outreach designed to address the unique needs of the community.

Many of the patients who are referred to the center have financial, language, and social barriers that make it difficult for them to get the services they need.

The navigators help patients and family members access health care services and overcome obstacles to care. The obstacles include financial and insurance difficulties, communication challenges, emotional concerns, and other barriers, such as lack of transportation that result in missed appointments.

"The health care system in New York delivers care in a fragmented manner. Poor and underinsured patients often get lost in the complexities of the health care system. The patients see their primary care physician, who sends them to a specialist, who then sends them somewhere else to receive treatment. The health care system is not user-friendly, and it turns people off," Rodriguez says.

The navigator helps patients find their way through the health care maze and helps alleviate any barriers that may arise.

Patients typically are referred to Ralph Lauren Center by their primary care provider for additional testing after a suspicious finding from a screening modality. All new patients who come into the center have an initial session with a navigator as soon as they register.

Navigators work the clinic hours, introduce themselves, and use the opportunity to assess the patient’s potential needs.

At the end of each week, the four navigators on the staff are assigned to particular patients. They may or may not be the navigator who met the patient during the assessment.

When the results of the follow-up test are in, the patient navigator is notified and tracks the patient during follow-up visits.

The navigators then follow the patients throughout the continuum of care until they complete the initial treatment regime. The program has been expanded so that navigators work with the patients if they have a recurrence or need hospital care or pain management.

The navigators have between 20 and 30 active cases open at a time. They follow the patients as long as they are in treatment. With some patients who receive chemotherapy, they may follow them nine months or longer.

Patients can call their navigator when they have trouble getting an appointment with a provider, when they need transportation, or when they have questions about what they should do next.

"Patient navigators are trained to help the patient navigate through the health care system. Their job is to help educate the patient and make sure he or she gets all the way through the treatment process by helping them overcome barriers to care," Rodriguez says.

Many of the barriers to care are financial, Rodriguez says. About 30% of the population served by the center present as uninsured.

"When the barrier is financial, we have to create access for them," he says.

If patients are uninsured, the navigator determines if they fit the criteria for Medicaid, Medicare, or another subsidized program.

"We have a Women’s Health Partnership that covers treatment for women with breast and cervical cancer if they fulfill the criteria. In all cases, the navigator advises the patients as to what documentation is required," he says.

Communication barrier

The navigators have the authority to submit Medicaid applications and to defend them. They go to the Medicaid office and get a "pending" letter that allows the Ralph Lauren Center to facilitate treatment that may have to occur in other facilities.

"There’s a 30- to 45-day wait for final approval of Medicaid eligibility. In the meantime, we can still move the patients along in their treatment," he adds.

Communication is another barrier to care among the poorest of patients, Rodriguez says.

Many of the patients have limited literacy and often speak a different language from the doctor, making it difficult for them to absorb everything at once.

The navigator facilitates meeting with the practitioner and helping the patient understand what has happened and what the next step in the treatment process should be, he says.

"The navigators never give out medical advice. They facilitate meetings between the patient and the practitioner and help the patients get the treatment they need," he says.

Sometimes the navigators accompany patients on their physician visits if there are communication issues or the patient wants the navigator present for support.

The navigators help the patients get their X-rays, test results, and other records they may need as they see a variety of specialists during the treatment process.

"We do a lot of transportation of medical files. We get copies of all relevant information for the patients, keeping a package here, and disseminating them with their permission.

The navigators can make referrals to community services such as welfare, housing, home care, and transportation. They help the patients deal with other health problems, symptoms, pain, complication, second opinions, and finding hospice care when necessary.

The program has a part-time social worker who can facilitate services such as transportation and home care.

"We use the social workers for crisis management and psychosocial issues and when we realize that a patient is eligible for SSI [Supplemental Security Income] permanent disability payments," he says.

The hospital hires as many navigators as possible from the community. There are no educational standards, but the navigators do have to be sympathetic and empathetic with the patients.

"When we choose navigators, we look for cultural homogeneity with the people we serve. They don’t have to be of a particular race or ethnicity but should have cultural sensitivity," Rodriguez says.

They must be familiar with the network of community health care providers and know how to refer among collaborating institutions, he adds.

The patient navigator program was started at Harlem Hospital in 1989 by Harold P. Freeman, MD (who now is medical director of Ralph Lauren Center), as a result of the high mortality rates of breast cancer patients in the community the hospital served.

"Dr. Freeman found that women diagnosed with breast cancer in the Harlem community had a dismal survival rate, comparable to that of a third-world nation," Rodriguez reports.

At the time, women in underserved communities had access to mammograms but there was little follow-up and the women who had cancer often did not seek treatment, he adds.

When the Ralph Lauren Center was opened in 2003 to provide treatment options for the area’s underserved population, Freeman became medical director and started the navigator program at the new facility.

The initiative started with breast cancer patients and has been expanded to include patients with cervical, colon, and prostrate cancer.

The center has developed a kit with details on how to set up a patient navigation program. It’s available at www.patientnavigation.com.