National Cancer Institute NCI Cancer Bulletin: A Trusted Source for Cancer Research News
July 24, 2012 • Volume 9 / Number 15

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Special Issue: Oncology Nursing

As Patient Navigation Expands and Evolves, Nurses Assume Many Roles

Arrow exiting maze
Nurses help patients with cancer navigate a maze of tests and treatments.

Nurses have always supported and guided patients with cancer through difficult times and often complex treatments. It’s what they do.

Now, in small but growing numbers, oncology nurses are joining the ranks of patient navigators—a diverse group of lay people and health care professionals who assist patients at all stages of cancer care, from screening and diagnosis to treatment and survivorship.

“In the labyrinthine health care system we have today, patient navigators play a critical role” in helping people gain access to care, said Dr. Steven Patierno, deputy director of the Duke Cancer Institute and a leader in the field.

Nurses can be particularly helpful after a patient has been diagnosed and during treatment. “This is when nurses really shine,” noted Dr. Patierno. “The coordination of care at this time is so important, and oncology nurses speak the language.”

Although navigation is still relatively new, some lessons are starting to emerge. Much of this knowledge has come from nurses who work as navigators or train and supervise navigators.

Extra Support

With a single nurse, the Billings Clinic Cancer Center in Billings, MT, launched a pilot patient navigation program in 2003. Today, the clinic has eight navigators dedicated to specific types of cancer and another focused on survivorship. All patients are offered navigation services.

“Every day is different,” said Deb White, an oncology nurse who helps patients with head and neck cancers navigate their care. “A lot of people see us as an extra level of support. They hear what the physicians have to say, and they call us later with questions.”

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Produced and edited by Natalie Giannosa

Back in 2003, the nurse doing navigation primarily coordinated care for underserved patients, many of whom traveled long distances to the center. As navigation expanded, there were many success stories and some growing pains. Defining the roles and expectations of navigators has been an ongoing process, according to Karyl Blaseg, a nurse who manages the team.

In the past, the navigators tried to attend every medical appointment, but, as the number of patients rose, that became impossible. Navigators are now expected to be part of diagnosis and treatment-planning meetings, but they may choose not to attend appointments and catch up with patients at other times.

“We are fine tuning which activities the navigator should be doing on a daily basis,” said Blaseg. “After doing navigation for 9 years, you might think we would have perfected this. But it’s hard; navigators want to be all things to all people, and this is not possible.”

Harnessing Energy

The concept of patient navigation was developed in the late 1980s by Dr. Harold Freeman, a surgeon in Harlem in New York City. He wanted to help African American women with breast cancer gain access to potentially life-saving health care. This would be done primarily by using navigators to eliminate barriers to the diagnosis and treatment of early-stage disease.

The first navigators were lay people from Harlem who were sensitive to cultural and language barriers to care in that community.

“Navigation is a way to harness energy from a community that people can then use to help others in the community,” said Dr. Freeman, who runs an institute that trains navigators. Karen Schwaderer saw this phenomenon firsthand in 2004, when she started a navigation program for underserved groups in western Pennsylvania, such as the Amish.

Although some Amish distrust medicine, Schwaderer, a nurse, was able to provide health resources by working with an Amish woman who wanted to bring services to the area. “We let the community—through this woman—drive the outreach services from our hospital,” Schwaderer recalled.

The navigators in this NCI-sponsored program were health care professionals but not nurses. Their jobs were to connect minority, elderly, or low-income people with financial help and transportation.

From a cost perspective, lay people and others who are not nurses would likely do the work for less money than nurses, and would therefore be preferable to nurses, noted Schwaderer, who is now a navigator for women with breast cancer at West Penn Allegheny Health System in Pittsburgh, PA.

“The type of navigator should be driven by the needs of the individual program,” Schwaderer continued. “If a care coordinator would suit your program, then an oncology nurse would be appropriate. If your program is in need of resource navigators, those would not necessarily need to be nurses.”

She added, “As oncology nurses, we are all navigators.”

Sharon Francz, founder of a grassroots organization called the National Coalition of Oncology Nurse Navigators, agreed: “Nurses who are doing navigation know that it is an added benefit for a cancer program. And, hopefully, by getting patients to follow care instructions, nurses will help patients become survivors with an improved quality of life.”

New Navigation Assessment Tool

All patient navigation programs are unique, but medical centers often face the same challenges and barriers in trying to establish and expand navigation services. An NCI-sponsored working group has just released an assessment tool that could be used to develop patient navigation programs at community cancer centers.

Created in a matrix format, the Navigation Assessment Tool includes 16 core measures identified by the working group as essential for any navigation program. Cancer centers can use the measures to set goals and assess the progress of their navigation programs, according to the NCI Community Cancer Centers Program, which supported the project.

For a PDF of the Navigation Assessment Tool, click here.

Tailored Programs

Just as every patient is different, navigation programs should be tailored to the medical center and patient population, noted Patricia Strusowski, clinical director of the Cancer Program at the Helen F. Graham Cancer Center at Christiana Care Health System in Newark, DE.

“But all navigation programs share the same barriers and challenges; we’re all kind of going through this together,” she added. To help people in the field evaluate their programs, Strusowski and her colleagues in the NCI Community Cancer Centers Program (NCCCP) just released a navigation assessment tool with 16 key components of a navigation program. (See the sidebar "New Navigation Assessment Tool.")

A question in the field is whether to have a single navigator follow patients through to survivorship or to use a team model. At the Graham Cancer Center, patients are transferred from treatment navigators to survivorship navigators once they have completed therapy.

Patients in survivorship mode “have a different mindset—they want to know how to eat better and exercise more,” said Strusowski, adding, “Treatment navigators can’t hold on to these patients forever, because the case load would be too high.”

Pairing Nurses and Community Health Workers

Leaving the hospital can be a difficult transition for some cancer survivors. A pilot program being tested in Texas could help support survivors in their homes through the collaborative efforts of oncology nurse navigators and community health worker students at the Houston Community College Coleman College for Health Sciences.

“This would be an extension of oncology nurse navigation from the hospital out into the community,” explained Dr. Amy Deutsch, the advanced practice oncology nurse at Memorial Hermann Healthcare System, the largest nonprofit health care system in Texas.

During a recent clinical training session, three oncology nurse navigators mentored community health worker students through the phases of the cancer care continuum—from screening to treatment interventions to supportive care. The students were selected in part for their familiarity with the cultural traditions of the neighborhoods they would serve.

The pilot program, which is in its infancy, illustrates another way that nurses are playing a role in the evolution of patient navigation. A goal of the program is to develop new resources for cancer survivors in the community, particularly as hospital stays are being shortened.

“Many patients feel very scared when they leave the ‘protective arm’ of the hospital,” said Dr. Deutsch. “This collaboration could provide a way to extend that protective arm a little bit further.”

Shaping the Future of Navigation

Few studies of the cost-effectiveness of patient navigation or the benefits to patients have been published. Without much data and given the current economic climate, the future of patient navigation seems to be uncertain.

Nonetheless, many in the field are optimistic. Some point to a new requirement for accreditation by the American College of Surgeons Commission on Cancer: by 2015, cancer centers must provide patient-navigation services.

“Our patients have told us that having a navigator has made all the difference in the world to them with regard to their treatments,” said Strusowski.

Dr. Patierno, who has developed training for navigators, believes that navigation is here to stay, though it is unclear what it will look like.

“Because cancer care is so complicated, there’s no question that everyone, regardless of income level, could benefit from navigation,” he said. “The original intent of patient navigation was to help people overcome barriers, though. Everyone will benefit from navigation, but the underserved will benefit the most.”

Edward R. Winstead

Evaluating Patient Navigation

The largest study to date assessing patient navigation is expected to report results later this year. Sponsored by NCI's Patient Navigation Research Program, the study included more than 10,000 participants from diverse racial and ethnic groups and asked a number of questions related to navigation. The navigators in the study were primarily lay people, but nurses played a role as supervisors.

The findings will indicate that patient navigators assist people in overcoming barriers to health care and also help people who are at risk of "falling out" of the system stay in the system, according to Dr. Martha Hare of NCI's Center to Reduce Cancer Health Disparities.

"Navigators are great at overcoming barriers," said Dr. Hare. "They are also tenacious. They engage and educate people who are at risk of being lost in the health care system, especially people who may not speak English or who may have test results that are difficult for a lay person to understand."

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