Finding Your Way with Nurse Navigators

Oncology nurse navigators can make a significant difference in the care provided to a cancer patient by serving as the point person, advocate, and teacher throughout the continuum of care.

Imagine that you or a loved one has just received a cancer diagnosis. Your head is spinning with the “C” word and your emotions are running high. You feel like a deer in headlights with the world shifting on its axis as you are told you have to go here, go there, schedule this and that. All you hear is “cancer.” It is overwhelming and enormously confusing. What do you do? If you live in a community where there is access to an oncology nurse navigator (ONN), you are in luck.

If you are an oncology nurse, you are familiar with this scenario. You have spent hours working with patients who need guidance, handholding, resource management, education, information, and reassurance. However, you also know that it is a challenge to meet all of these needs when you are also the chemo nurse, radiation oncology nurse, or floor nurse. Time is at a premium in your busy day.

The role of the oncology nurse navigator is an emerging discipline in oncology nursing. It is rapidly becoming the touch point or “411” of cancer care for newly diagnosed cancer patients in hospitals and clinics across the country. The oncology nurse navigator is the only nurse throughout the continuum of cancer care who has no endpoint for the patient and family. The ONN begins his or her interaction with the patient at the point of diagnosis and remains with that patient throughout the entire diagnostic and treatment process, and often through survivorship and end-of-life issues.

There are many reasons for the advent and growth of oncology nurse navigation. Breast centers have historically been the most common venue in which a nurse navigator position has been implemented. Women who present for a screening mammogram and follow-up are given the opportunity to work with a nurse navigator who will assist them with more timely access to care. The nurse navigator is available to provide information and support to the woman if she needs a breast biopsy. In the event of a breast cancer diagnosis, the nurse navigator becomes the personal care coach who is an information and support resource from the point of diagnosis forward.

The origins of the patient navigator concept

The patient navigator is often used as a generic term for anyone who serves as a guide for someone in need of help with a cancer diagnosis. There may be more than one navigator, each with a different focus or role, working collaboratively with one another to advocate for the patient. As these positions enter the mainstream, it is important to understand the differences, as well as the similarities, in the roles and responsibilities of the navigator.

In “Reducing Disparities in the Burden of Cancer: The Role of Patient Navigators,” Fowler and colleagues noted that, “historically, the concept of patient navigation can be attributed to Harold Freeman, a distinguished cancer surgeon and former president of the American Cancer Society (1988—1989). In 1990, Freeman and colleagues… implemented the nation’s first patient navigator program at Harlem Hospital in New York. The purpose of the program, sponsored by the American Cancer Society, was to assist low-income and medically under-served patients in overcoming barriers to obtaining prompt diagnostic and treatment services following abnormal or suspicious cancer screening findings. A program evaluation showed that patients who received patient navigator services had a significantly decreased time until follow-up services were received compared to those who did not. Similarly, a later study at Harlem Hospital [published by Freeman, et al. in the Sep/Oct 2004 issue of Oncology Issues] found significant improvements in diagnosis and five-year survival rates among patients with breast cancer and attributed the improvement to patient navigation services.”

Fowler and colleagues also wrote that “In recognition of the fact that patient navigators can play an important role in promoting access to clinical trials, the NCI’s Center for Cancer Research, in collaboration with the Center to Reduce Cancer Health Disparities and the Division of Cancer Treatment and Diagnosis, sponsored the first NCI Patient Navigator Academy (PNA) in the spring of 2005 at the newly opened National Institutes of Health Clinical Research Center in Bethesda, Maryland. This three-day program provided patient navigators with an overview of cancer, its treatment and psychosocial impact on individuals, and an overview of clinical trials and resources available for access to cancer clinical trials, both at the National Institutes of Health Clinical Center and nationally.”

Another important milestone in the development of patient navigation was the creation of the American Cancer Society Patient Navigator Program. It was launched in 2005 “in collaboration with numerous community-based hospitals and cancer centers,” and was intended to “directly link those affected by cancer to targeted education and support specialists—known as ‘navigators’—who serve as personal guides for patients as they face the psychological, emotional, and financial challenges in their cancer experience.” The ACS program strategically selected care facilities in order to reach those populations with the greatest need. Navigators at each program location provided “access to in-depth information and the established wealth of American Cancer Society cancer resources tailored to the patients’ local communities.”

Dr. Freeman’s patient navigation initiative was focused on reducing disparities in cancer care through breaking down barriers to care. The NCI Patient Navigation program is similar to the program that Dr. Freeman developed. The American Cancer Society Patient Navigator program is designed to assist patients and families to access ACS Patient services and programs such as Road to Recovery, Dietician on Call, I Can Cope, and Reach to Recovery. The ACS Patient Navigator is usually a layperson who does not have clinical nursing experience. He or she may be a cancer survivor and have a firsthand sense of what a newly diagnosed cancer patient is experiencing. His or her role may be literally guiding a patient through the hospital corridors to find their way, or to assist with financial concerns and access to community resources.

The concept of patient navigation has many facets and is growing in popularity nationwide. However, it is also often misunderstood and not well defined to the general public nor to the medical community. It is clear, though, that patient navigation is more than a concept. It is a phenomenon that is sweeping through the cancer care community. It is a new discipline in oncology care and, as such, is in need of some effort to coordinate all of the good intentions into a cohesive and collaborative benefit for patients and healthcare providers.

Patient navigation in 2009

As this new role is being implemented in numerous facilities across the country, the need to define the scope of practice and appropriate job definition of lay, nurse, and social work navigation is critical. The patient, public, and healthcare communities must understand that the roles of the personnel filling these positions are not always interchangeable. However, collaboration must take place in order for the patient to realize the most effective benefit from navigation. The publicity about patient navigation may be somewhat misleading, as it does not always tell the whole story.

The National Coalition of Oncology Nurse Navigators is the only professional association representing the role of the nurse navigator. NCONN is dedicated to the support of the oncology nurse navigator, and is a result of the imperative to create and promote framework around the important role that the ONN plays in cancer care today. The ONN has the ability to change the face of cancer care. The ONN takes the leadership role in guiding, advocating for, and educating the patient and family throughout the cancer spectrum. He or she is the clinical professional with the knowledge and skills necessary to assess patient needs and make referrals to appropriate resources and services that will relieve the patient’s burden and give him or her the resources necessary to concentrate on treatment and recovery. This may include facilitating appointments, answering questions about diagnosis and treatment side effects, making connections to psychosocial counseling, finding a wig, holding a hand before or after surgery, facilitating support groups, providing resources for children to explain a parent’s cancer diagnosis, and numerous other issues. There is a large component of educating and providing psychosocial support to the cancer patient and his or her family.

The ONN is the only discipline in oncology nursing that will interact with the patient at the beginning of diagnosis and treatment and may never have an endpoint. Patients often remain in contact with their navigator long after treatment ends.

The ONN is the team leader and should be the point person in the continuum of the cancer patient’s care. Every hospital, oncology clinic, and private oncology practice should have an oncology nurse navigator who leads the team of navigators through their role as facilitators for meeting the needs of every person being treated for cancer. NCONN, in partnership with a variety of other stakeholders across the country, is taking the lead in elevating, defining, and supporting the concept of patient navigation, and the discipline of oncology nurse navigation in particular. If you are an oncology nurse navigator, patient care coordinator, nurse advocate, or other related healthcare professional, and you see yourself defined in this article, you should consider yourself an ONN. NCONN is your professional association working toward building consensus and definition around the patient navigation initiative. Nurses typically take the responsibility for the task that is most challenging. In order for the discipline of patient and nurse navigation to evolve and thrive, nurses are once again at the forefront. Every nurse in this role or thinking about navigation has the opportunity to network with colleagues across the local, regional, and national arena to draw upon the experience and skills of other nurse navigators. Together, nurses are taking the lead in creating a more organized, compassionate, caring experience for cancer patients and their families.

For more information about oncology nurse navigation or patient navigation, go to www.nconn.org or www.cancer.org.

Tina Beerman, RN, BS, is president and co-founder of the National Coalition of Oncology Nurse Navigators.