By Lillie D. Shockney, RN, BS, MAS
- The nurse navigator’s role is to assist patients through hospital and human services bureaucracies.
- Navigation begins with community outreach to raise awareness about the value of prevention and early detection in underserved communities. It is most engaged at the point of diagnosis and arranging treatment plans, and it continues throughout treatment into survivorship or end of life.
- A key navigator role, from a patient-driven care perspective, is to ensure that the entire team knows the patient’s life goals and incorporates these goals into the treatment planning process, so that survivorship care begins at time of diagnosis; knowing their life goals and hopes also applies to patients with metastatic disease.
Multidisciplinary oncology teams have been in place for some time and provide patients with the benefit of receiving care from a team of specialists who work together to provide the right treatment, in the right order, in the right setting, and at the right time. The oncology patient navigator is a relatively new addition to this team of specialists. Based on a national survey conducted in 2014 by the Academy of Oncology Nurse and Patient Navigators (AONN+),more than 75% of navigators today are registered nurses or advanced practice nurses, 20% are lay nonclinical patient navigators, and 5% are social workers or other allied health care professionals.
Patient navigation was conceptualized by Harold Freeman, MD, at Harlem Hospital in the 1990s, with the goal to reduce mortality among underserved women by sending caseworkers into communities to raise awareness and facilitate mammography screening. This resulted in women getting diagnosed sooner resulting in having very treatable early-stage breast cancer than so many underserved women coming to the hospital with late-stage disease at time of diagnosis. Nurse navigation, however, has a different and more complex beginning.
The Evolution of Nurse Navigation
Nurse navigation evolved from utilization review in the 1970s, where a nurse retrospectively reviewed medical records to identify barriers to treatment or timely discharge. This identification, however, led to hospital and professional fees being denied, and, consequently, utilization review nurses had an adversarial relationship with hospital administration and physicians. Utilization review evolved to utilization management, where the nurse concurrently reviewed medical records while a patient was hospitalized and identified barriers to care or lack of documentation to justify the medical necessity for continued hospitalization.
Next, utilization management evolved into case management by the late 1990s. At last, nurses served as members of the treatment team, primarily focusing on patient populations with specific chronic illnesses. They still identified barriers to care, but they were in a position to resolve these barriers in real time. The care provided to patients included finally outpatient treatments and chronic care management in clinics, too. By the end of the century, case managers evolved into nurse navigators. Nurse navigators serve as an instrumental part of the multidisciplinary team, and their role was specifically developed for patients with cancer.1,2 Patients with breast cancer were among the first to receive the support of nurse navigators.
The Nurse Navigation Process
An oncology nurse navigator has numerous responsibilities. Depending on patient volume and organizational structure, there could be one oncology nurse navigator or a tandem team across the care continuum. The nurse navigator’s role is to assist patients through hospital and human services bureaucracies. Among other duties, they provide psychosocial support; assist the patient with treatment decision making; assist or make referrals regarding insurance issues; arrange transportation needs when it is a barrier to care; coordinate and/or document tumor board case discussions; coordinate services (such as fertility preservation before chemotherapy or cancer rehabilitation before surgery); track interventions and outcomes; and build relationships with other navigators involved.
The nurse navigator will always stay in close communication with the patient across the care continuum to ensure care coordination, efficient care delivery, and removal of care barriers. Additionally, the nurse navigator promotes adherence and provides emotional support, meaning nurse navigators must have a strong patient-advocacy focus. As part of the advocacy role, the navigation process must factor in the need for culturally competent care. This means ensuring confidentially is maintained, demonstrating respect at all times, providing compassionate delivery of care and services, and providing mindfulness to patient safety.
Navigation is a process, not a person. Navigation, as defined by AONN+, is “a process whereby a patient is given individualized support across the continuum of care, beginning with community outreach to raise awareness and perform cancer screening, through the diagnosis and treatment process, and onto short- and long-term survivorship or end of life.” Health care settings and needs of specific patients and multidisciplinary teams can vary, thus resulting in varying processes.
The overarching aims of implementing a navigation process are to: (1) reduce cancer incidence and mortality and improve the quality of life of people with cancer, especially in regions with health disparities; (2) deliver culturally targeted education; (3) provide access to early screening, diagnosis, and treatment; and (4) supply assistance and navigation through the complexities and barriers of health care systems.
Before implementing a navigation process, it is important to first look at the current process of a patient going through the health care delivery system. This requires objectively evaluating the operational process and identifying where during the care trajectory a patient can potentially fall through the cracks, where rework is happening, and the optimal tasks and functions of each team member.
Other factors to consider when determining what type of navigation program to implement are volume and characteristics of patients treated, including disease stage and socioeconomic background. Annually, a nurse navigator can navigate several hundred patients with early-stage breast cancer who have health insurance, employment, transportation, etc., but can only navigate a fraction of patients who have locally advanced breast cancer and are from underserved populations.
The Oncology Roundtable, a subdivision of The Advisory Board Company, developed different navigation models based on nationally conducted interviews, site visits, and surveys. Some models are based on specific tumor type (e.g., high-volume, organ-specific with low acuity or low-volume, or organ-specific with high acuity), whereas others encompass low volumes of patients with all cancer types, resulting in one navigator supporting all patients. Other models are based on the patient entry point; for example, a multidisciplinary clinic model would hold a navigator responsible for timely case presentations and follow-up coordination. The physician-based model is yet another example for which a navigator works specifically with assigned physicians, regardless of specialty. In the community-based model, a navigator performs needs assessments and community outreach for specific subsets of populations who are experiencing disparities in care.
Advocating for Survivorship Care
When a patient is diagnosed with cancer, the focus is on the patient’s medical results. In planning treatment, patients themselves may become lost in the process. A wonderful asset of having a nurse navigator is that they serve in an advocacy role to ensure that the patient is more than a test result. This begins with inquiring what the patients’ life goals were before their cancer diagnoses. In doing so, the navigator documents these goals into the electronic medical record for the multidisciplinary team to acknowledge and factor into treatment planning. These life goals, whenever possible, must be dovetailed with the treatment planning process so that they can be preserved, rather than sacrificed to cancer diagnosis and treatment. This means that survivorship care starts at the time of diagnosis and not at the completion of treatment.
For younger patients, the team will factor in childbearing goals through fertility preservation or selecting treatment that would maintain fertility. For patients who have advanced cancer and/or untreatable disease, life goals are equally as important. The navigator can work with the patient to develop alternative ways to fulfill these hopes rather than abandoning them due to their illness. And when the disease has progressed, the navigator becomes the confidant to help ensure the patient’s current goals are being addressed, which may result in the patient opting to stop treatment and focus on preservation of quality of life.
The nurse navigator performs additional roles in survivorship care to help prepare the patient for life after treatment. Setting expectations during the first consultation is useful so the patient understands survivorship milestones, such as when they will be transitioned back to their primary care provider. A nurse navigator will educate survivors on adopting a healthy lifestyle to reduce future cancer risk, coping with fear of recurrence, and managing long-term side effects, among other survivorship concerns.
Evaluating the Success of a New Navigation Process
It is important to evaluate the impact of a new navigation process by determining success metrics. Some common measures include improved coordination of high-quality care, enhanced access to services for all patients, removal of care barriers, more efficient delivery of care, improved outcomes, improved sharing of resources, enhanced community relationships, increased patient satisfaction, and increased referrals of new patients to the system. To more efficiently measure care delivery, one might measure the time delays from mammogram screening to diagnostic mammogram, biopsy, pathology results confirming diagnosis, and appointment for consultation with a breast surgeon.
Determining what the team believes is the ideal timing also must be established in advance. Involving cancer survivors in this process can be very insightful. For example, it may sound logical to have a patient be seen by a breast surgeon the same day they learn they have been diagnosed with breast cancer, but a breast cancer survivor may tell the team that this is actually too soon. The patient must process this information, gather the family they want at her appointment, write down their questions, and so forth. In this case, a few days to a week after diagnoses may be the ideal time to schedule a surgeon consultation.
In 2015, the Commission on Cancer implemented standards specifically for the oncology navigation process. However, navigation shouldn’t be implemented to solely fulfill a standard; it is the right thing to do for the patient.
AONN+ is the only professional organization dedicated to career training, research, education, networking, resource access, and support of both oncology nurse navigators and nonclinical patient navigators. AONN+ has established certification programs for both nurse and patient navigators. Oncology nurse navigation certification consists of a general oncology nurse navigation certification program and examination, and AONN+ is also developing organ-specific certification. Certification candidates are evaluated on their knowledge and skill levels for operations management principles, performance improvement, communication skills, and health care economics. A nurse navigator must have completed at least 3 years working as a nurse navigator to apply.
It is unknown how many national cancer centers and oncology facilities currently employ navigators. In some cases, those performing the role may carry a different title, such as care coordinator or care manager. AONN+ membership comprises nearly 6,000 nurse navigators and several hundred lay patient navigators. The volume of nurse navigators and patient navigators, by whatever title they carry, is anticipated to dramatically increase in the coming few years, whether it be to meet the Commission on Cancer standards or simply because it is good practice of patient-centered care.
Oncology nurse navigation is a relatively new professional field, yet it is recognized as a valuable component of the multidisciplinary cancer care team. Because physicians have increasingly less time due to more patients being diagnosed with cancer than ever, the value of having oncology nurse navigators as a member of the multidisciplinary team will grow. Nurse navigators perform barrier assessments and provide solutions to improve patient care, serve as an advocate to identify life goals and incorporate them into the treatment planning process, jumpstart survivorship care at the time of diagnosis, provide patient and caregiver education, give psychosocial support, facilitate care coordination, and serve as a communication hub for the multidisciplinary team. The nurse navigator is an excellent example of promoting patient centered-care in oncology.
About the Author: Dr. Shockney is a university distinguished service associate professor of breast cancer at Johns Hopkins University School of Medicine, administrative director of Johns Hopkins Breast Center, director of Cancer Survivorship Programs for the Kimmel Cancer Center at Johns Hopkins, and co-founder of the Academy of Oncology Nurse and Patient Navigators.