When I was diagnosed with breast cancer in 2008, nurse navigators were not available everywhere, and there were none in my locale. Since there was a multi-hospital, dedicated breast health center, I could, if I chose, schedule visits and coordinate communication with my surgeon, my radiation oncologist, and my medical oncologist through the center rather than see them at their individual offices. Theoretically, that is. In practice, the center only served to complicate rather than coordinate, and eventually I dispensed with it altogether. If I’d had a nurse navigator, s/he might have smoothed some of the bumps. Now, as a home care physical therapist, I deal with oncology nurse navigators regularly. And they do help. But the road to coordinated cancer care is still bumpy.
What is an an oncology nurse navigator?
The concept of cancer patient navigators was first conceived in 1990 by Dr. Harold Freeman and his colleagues at New York’s Harlem Hospital [Efficacy of Oncology Nurse Navigators]. In practice, oncology nurse navigators have been around since the late 1990’s [Report on a Study on the Role of the Oncology Nurse Navigator]. Since then, defining their role has been complex. Not all cancer navigators are nurses. Some are social workers, and some are not clinicians. As such, their roles may be different.
In a study published in February, 2012 in the Journal of Health Care for the Poor and Underserved [Cancer Patient Navigators & Their Role in Cancer Care], a navigator is defined as “an individual trained to help identify and resolve real and perceived barriers to care, enabling patients to adhere to care recommendations and thus improve their cancer outcomes.” These barriers may be include lack of access to basic information about symptoms and preventative care. Navigators can play a role across the spectrum, from screening to treatment, from survivorship to palliative care.
Seeking to improve U.S. cancer care and reduce incidence and treatment disparities the National Cancer Institute launched the NCI Community Cancer Centers Program in 2007 in hospital-based cancer centers to “support cancer research and enhance the quality of cancer care at the nation’s community hospitals.” The program required patient navigators. Quoting from the website, participating hospitals have studied ways to:
- Reduce cancer healthcare disparities
- Increase patient participation in clinical trials
- Improve quality of cancer care
- Enhance cancer survivorship and palliative care services
- Expand use of electronic health records and connect to cancer research data networks
- Promote collection of high-quality biospecimens to support genomically-informed research (also known as personalized medicine)
In 2014, this program was replaced with the NCI Community Oncology Research Program in order to “conduct multi-site cancer clinical trials and studies in diverse populations in community-based healthcare systems across the United States and Puerto Rico.” Meanwhile, navigators continue to play a role.
What do navigators do?
From Cancer Patient Navigators and Their Role in Cancer Care, the job is multi-faceted:
To put it in practical terms, my clinical experience primarily with nurse navigators has meant that they accompany newly-diagnosed cancer patients to doctor visits, help explain the risks vs. benefits of treatments, provide emotional and practical support, coordinate care, and solve problems. To my mind, their most meaningful task is to ensure that patients understand the harms and benefits of treatment. Too often, oncologists either do not explain everything, or they recommend only one treatment option. Patients who are grappling with the shock of having a cancer diagnosis often don’t know they can ask questions or are too intimidated to ask them. A nurse navigator can ensure that patients consider and plan for the effects of treatments on their quality of life, ability to work, and capacity to care for their families.
Navigators are not all alike.
Not all oncologists are alike, nor are cancer navigators. I frequently work with two navigators from the same cancer center who see their roles differently. One tends only to reiterate the oncologist’s advice. The other is much more likely to encourage a patient to get a second opinion, consider all options, and enable her patients to be fully informed.
In an article called You Have Nothing to Lose, Lee Newcomer, who runs a cancer center, describes how a friend’s wife was seen by an oncologist whose recommendations did not reflect current evidence-based treatment for this woman’s particular breast cancer. The article underscored how important it may be not to take one doctor’s word as the last word, and to get a second opinion. But it can be uncomfortable for nurse navigators to interact regularly with oncologists who may not disclose all the information a patient needs.
That said, all navigators must first and foremost be patient advocates, and set aside biases or discomfort. To that end, navigators need to understand their role, and get the support and education they need to fulfill it. Many patients are incapable of advocating for themselves, and tend to let the doctors decide and endure the consequences. Navigators need to recognize that difficulty and intervene appropriately.
Researchers continue to study the efficacy of oncology nurse navigators, sometimes struggling to define parameters that truly reflect the value of the role they play. One such study reviewed the current research:[Efficacy of Oncology Nurse Navigators]. Looking at eighteen studies, it organized data by “rationale for implementation of nurse as navigator, study patient populations, navigator educational preparation, and measurable patient outcomes such as the time to diagnosis and treatment, effect on mood states, satisfaction, support, continuity of care, and cost.” Among other findings was the difficulty of measuring navigator effectiveness in terms of cost of care. Yet the study concluded that navigator interactions with patients represent a valuable service that can improve patients’ treatment experience and outcomes.
As a cancer patient myself, I think we need all the help we can get.
References & resources:
- Academy of Oncology Nurse & Patient Navigators
- Cancer Patient Navigators & Their Role in Cancer Care
- Delineating the role of the Oncology Nurse Navigator
- Efficacy of Oncology Nurse Navigators
- NCI Community Cancer Centers Program
- NCI Community Oncology Research Program
- National Comprehensive Cancer Network Patient Guidelines by Cancer Type
- Report on a Study on the Role of the Oncology Nurse Navigator
- You Have Nothing to Lose