The benefits of oncology navigation have been demonstrated in countless malignancies, and for many patients and providers it is now difficult to imagine a world without oncology navigators.
But it is not only patients with cancer who are in need of navigation. As more recognition has been given to improved patient outcomes in the oncology space due to navigation, navigators of patients with chronic diseases have taken note and have expressed their desire for a professional organization with as much reach and as many resources as the Academy of Oncology Nurse & Patient Navigators (AONN+), according to Lillie Shockney, RN, BS, MAS, HON-ONN-CG, Co-Founder of AONN+ and University Distinguished Service Professor of Breast Cancer at Johns Hopkins University School of Medicine.
“As members of AONN+, we all live and breathe in the oncology navigation space,” said Ms Shockney at the AONN+ 12th Annual Navigation & Survivorship Conference in November 2021. “But for once, this discussion is about non-oncology navigation.”
Starting the Wheels Turning
When the COVID-19 pandemic began, nurse navigators in a variety of fields outside of oncology started reaching out to Ms Shockney on LinkedIn. They were from a wide variety of specialties, including COPD, heart disease, diabetes, and orthopedics.
“They were asking me if I knew of an organization—like AONN+—but for non-oncology nurse navigators,” she recalled. “And those of you who know me know that I’m not the type of person to sit around and wait for somebody else to do something.”
She and her colleagues took a deep dive into the literature to determine whether there was a need to develop a national professional organization for nurse navigators working outside of oncology.
A formal scoping review of published literature, in addition to online surveys of navigators in a variety of specialties and interviews with leaders in the field, revealed that there was indeed a need for a professional organization dedicated to navigation in chronic disease and complex care. And so, work began on launching the Association of Chronic & Complex Care Nurse Navigators (ACCCNN).
The Burden of Chronic Disease
It is common for cancer survivors to live with multiple comorbidities, and the same is true for people living with noncancer-related chronic disease, according to Rani Khetarpal, MBA, head of Trade Innovation & Growth at CVS Health, who is involved in the initiative to launch ACCCNN.
Half of Americans live with at least 1 chronic disease, and 1 in 4 experience significant limitations in daily activities. The cost associated with this is massive: direct costs associated with chronic disease total $1.1 trillion per year, but when indirect costs are added, the price more than triples to $3.7 trillion per year in the United States.
“The US has a tremendous burden of chronic disease,” she said. “While the risk of chronic disease is not growing among older adults, the incidence is growing. This is an important distinction to make, because it means that the need for navigating patients through their chronic disease is absolutely critical.”
According to Ms Khetarpal, the burden of chronic disease, coupled with the rapid shifting of payment paradigms in healthcare from fee-for-service to value-based care, establishes the need for chronic care navigators.
“There’s still a lot of work to be done in chronic care navigation to truly move the needle forward, as we have done in oncology care navigation,” she said. “So, defining and delineating the roles and responsibilities involved in chronic care navigation will constitute the next phase.”
Navigators—in any field—require continuous education, meaningful resources, and peer support that allow for a patient-centric approach to managing chronic and complex disease. “So what this association is trying to do is provide boundaries, descriptions, and real concreteness to these different ‘buckets,’” she explained.
Healthcare Climate Ripe for Change
A number of factors further underline the need for a professional navigation organization for chronic and complex care:
- The shift from inpatient to outpatient settings is resulting in decreased volumes and unsafe inpatient discharges
- A high rate of readmissions and unnecessary emergency department visits and hospitalizations
- A chasm exists between primary care providers, specialists, and hospitalists
- Length of stay is shortening, thereby sabotaging successful patient education, understanding of medication, and chronic disease management
- Nurses are concerned about unsafe discharges
“All of this has led to a situation in need of change,” said Ms Khetarpal. “Similar to what AONN+ has done with oncology navigation, we’re giving all of these different bullet points an opportunity to lean on navigation as a core function of patient care.”
Redeploying Clinical Nurse Specialists in a Chronic Care Navigation Program
“I have been a nurse for over 35 years, and during that time, I have witnessed healthcare going in the wrong direction,” said Billie Lynn Allard, RN, MSN, FAAN, administrative consultant for Population Health and Transitions of Care at Southwestern Vermont Health Care. “But until now, I hadn’t found a way to help us get on the right path.”
That is until she was involved in a program that redeployed clinical nurse specialists as transitional care nurses in the navigation of chronic care patients. In partnership with primary care offices, nurses from her institution identified, followed, and navigated high-risk, chronic care patients across the care continuum. In the span of only 6 months, this effort demonstrated a 50% reduction in hospitalizations within 1 of their partner hospitals.
“It wasn’t rocket science,” she said. “It was doable.”
Chronic care navigation offered through these partnerships also led to a 40% reduction in emergency department visits in patients with mental health and substance abuse disorders.
“We hired a patient advocate to be in the emergency department; many of these patients were getting medical workups because they would say they had chest pain or a terrible headache, just so they could stay for a few hours and get food, shelter, and attention,” she noted. “But they didn’t need to do that anymore.”
But more important than the 40% reduction in emergency department visits, “we saw patients’ lives transformed,” she added. “So many of them went on to lead a productive life, just because of that constellation of help.”
Another high priority in this effort was navigating patients with diabetes. Patients being followed across the continuum initially had a high rate of diabetes with poor control, but a nurse navigator acting as a diabetes coach led to a 14.5% reduction in A1c in diabetic patients.
Important Findings in Chronic Care Navigation
It became clear to Ms Allard and her team that the majority of healthcare occurs at the low acuity end of the scale (not in the hospital), and that patient outcomes are most influenced by everyday choices made by individuals and their families.
“We saw clearly that the largest opportunity for clinical staff to influence this is to partner with patients and their families over time,” she said. “[Oncology navigators] have known this forever, so I’m sorry that we didn’t pick up on the lead that you started so many years ago, because that was pivotal to our success.”
Another important finding was the importance of social determinants of health (SDOH) on patient outcomes. “We were amazed at the pivotal role of SDOH and wished that years ago we recognized that we need to focus on food, water, and shelter before we can manage chronic disease,” she said. “So that is now primary in the care we deliver.”
Finally, a “shocking” finding made by her team was that of the existence of a whole world of community resources (about which hospital staff were completely unaware).
“They were right in our community, ready, willing, and able to help us, and we could start to hand over cases to them,” she said. “That was a game changer and something that really laid the foundation for integrated care delivery.”
The Commonwealth Fund, through the American Academy of Nursing, is making the case for transformation in this field and is currently working on designing metrics to measure the impact of chronic care navigation.
“All of you have led the way down this path, and we are really following your lead,” Ms Allard told the audience of navigators. “This has been the most rewarding work of our careers, because we feel like we’re finally fixing what has been wrong in caring for our patients.”