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Chronic Disease Navigation Project

White Paper

Current Situation: As the United States begins to emerge from the ravages of a worldwide pandemic, it is abundantly clear that we have many issues regarding the delivery of high quality, equitable healthcare to our population. Despite the high cost of healthcare in America, healthcare quality outcomes including access and equity of healthcare are sadly lacking. Patients with cancer as well as those with chronic illnesses have had particularly difficult times since the COVID-19 pandemic materialized in early 2020. And it is rare to take care of a newly diagnosed cancer patient today without the individual already having at least one co-morbid chronic illness as well. Also due to COVID-19, a new chronic illness category has emerged called “COVID-19 Long Haulers.” These are individuals who have been diagnosed with COVID-19 in the past and are still suffering from chronic symptoms that result in new chronic illnesses, some of which we haven’t even discovered are happening yet.

Background on Oncology Navigation: In 2008, Lillie Shockney recognized the growing need for oncology nurse navigators as well as their professional needs for having a national organization that focused on nurse navigation as a nursing specialty. In 2009, she co-founded, with The Lynx Group, initially developing as a national professional nursing organization, with this need being its priority. She led a team of diverse oncology nurse navigators and oncology leaders to seek recognition for their specialized work through such an organization that would provide national conferences focused on oncology navigation, survivorship care, increased opportunities for education, networking, career growth, research, metrics for measuring performance, and peer review publications demonstrating best practices. In recognition that there are other professionals also performing navigation, AONN expanded its inclusion by incorporating patient lay) navigators, financial navigators, social workers, administrators and others who fulfill a critical role in the navigation of oncology patients and their family members across the continuum of care beginning with community outreach, through screening, diagnosis, all phases of treatments and onto survivorship/end of life. This expansion to achieve inclusion resulted in the “+” being added to the organization’s name and its official title including “patient navigators”. AONN+, the Academy of Oncology Nurse and Patient Navigators (AONN+), since that time, has substantially grown with more than 8900 nurse navigator, patient navigators, social workers and other healthcare specialists who have joined the organization, benefiting from the opportunity for tailored education, nationally accredited certification, opportunities for local, regional and national networking which includes the creation of more than 20 AONN+ regional networks nationally and internationally, and utilizing opportunities for career growth. AONN+ has coordinated care delivery essential to clinical quality outcomes and patient satisfaction for oncology patients and their families, simultaneously demonstrating ROI. This innovative work has served to be a roadmap for some of the value-based cancer care being achieved today.

Recognizing the Need for Navigation in the Chronic Illness Space: In the United States, 45% of Americans suffer from at least one chronic disease. Chronic diseases include diabetes, hypertension, stroke, heart disease, respiratory diseases, obesity, and other serious ailments. One in 4 people in this country have two chronic diseases while 50 % of older adults have 3 chronic diseases. Studies show this may be responsible for 73% of aggregate spending on healthcare in America. Combine this with 1 in 3 Americans being diagnosed with a serious form of cancers sometime in their lifetimes and it is clear that there needs to be additional focus on navigation that includes those diagnosed with chronic illnesses. This requires a call-to-action imperative to the population health and fiscal health of our country by supporting chronic disease care navigators as a breakthrough strategy for success. Additionally, with the improvements in cancer treatments that are happening daily, more and more cancers are and will be treated as chronic illnesses today and going forward. An example are patients with Stage IV breast cancer that is ER+/HER2- and limited to metastasis to the bone. Newer drug categories have been developed enabling these women to live in harmony with their cancer for a decade or more, still working and enjoying their lives.

In preparation for this scoping and fact finding undertaking to better understand the current landscape of what is happening in the chronic illness navigation space, a thorough scoping analysis of the literature was completed as well as online surveys of AONN+ members and interviews with KOLs across the country presently involved with chronic disease navigation. An in-depth analysis of the data for chronic disease was included to demonstrate the critical need for care coordination to assure patients are receiving appropriate care, monitoring, treatment, and education so their disease can be effectively managed. Concerning data emerged:

  • 1 in 10 Americans have diabetes.
  • 1 in 3 Americans have pre-diabetes.
  • 26.8% of patients over 65 years of age have diabetes
  • Each year 803,000 American are diagnosed with heart disease which is the leading cause of death in America.
  • 1 person dies every 36 seconds of heart disease.
  • Cost of healthcare, medications, and tests for patients with heart disease in 1 year = 219 billion dollars.
  • Lung disease and COPD is the 4th leading cause of death in our country costing over 49 billion dollars.
  • 65 million people have moderate to severe COPD often leading to disability and death.

In conversations with innovative healthcare providers involved in chronic disease navigation across the country, we found patient navigators, transitional care nurses, community health workers, social workers, psychologists, and others assisting patients to better manage care resulting in improved quality of life, patient satisfaction, overall health, and lower healthcare costs. Patients were supported to overcome certain modifiable barriers to care, encouraged to set personal they could successfully achieve thus transforming their confidence to better manage chronic disease. Care navigators and support workers’ responsibilities include:

  • Providing chronic disease education tailored to their individual needs.
  • Health system navigation across complex systems
  • Removal of medical system barriers to care (insurance coverage, access to funds for medications, assistance with scheduling/transportation)
  • Coordination of care across multiple sites of service
  • Referral to community resources and services
  • Providing emotional support and understanding
  • “Meeting patients where they are” without judgement.

Many of the care navigators were focused on patients with cardiac and respiratory diagnoses and diabetes. Other programs covered a multitude of other chronic diseases including sickle cell anemia, chronic kidney disease, HIV, high risk obstetric, newborn, and pediatric patients.

Many of their patients are:

  • Uninsured
  • Under insured
  • Insurance has lapsed
  • Homeless or live in unsafe conditions
  • Suffering with behavioral health issues
  • Afflicted with substance use disorder and addiction.
  • Have limited financial resources.
  • Unemployed
  • Diagnosed with multiple chronic illnesses.
  • Suffering with acute illnesses

Many care navigators determined patients without the issues above still benefitted from assistance. Observations shared:

  • Poor communication across providers resulting in conflicting instructions to the patient
  • Inadequate education provided to patients unaware of how to manage their symptoms
  • Misunderstandings on how to correctly take their medications
  • Patients feeling overwhelmed and anxious and needing reassurance and clear direction
  • Lack of a plan to address social determinants of health impacting successful recovery/improved health

It is essential that the United States build a care delivery system to improve the health of our population that costs less with improved health outcomes. The data demonstrates that chronic disease management is a critical issue that must be addressed. We believe that creation of a professional organization to support chronic disease navigation in our country is the cornerstone of a successful transition to value-based care delivery. AONN+ has demonstrated great success for patient navigation of oncology patients. Such an organization would provide:

  • Development of an interprofessional network platform for navigators caring for patients with chronic disease
  • Support for patient navigators to connect, share knowledge gain expertise
  • Encourage development of best practices, standards of care, guidelines for practice
  • Identification of metrics to measure success including clinical and financial outcomes
  • Share up-to-date strategies for chronic disease management
  • Support career advancement and recruitment of talented team members
  • Education re: Return on Investment for team-based care
  • Support research studies and publication

This is an opportune time to move forward with this strategy. Health systems and innovative care leaders across the country have been successful implementing care navigation for patients with chronic disease, successfully meeting the triple aim identified by the Institute of Healthcare Improvement in 2011:

  • To improve the patient experience
  • To improve the health of the population
  • To reduce per capita healthcare costs

Feedback shared during interviews with KOLs across the country included increased job satisfaction as care navigators transformed care delivery to better meet the needs in their communities and witnessed success and improved quality of life for their patients. This has been added to the triple aim and coined as the Quadruple aim with the goal:

  • To improve the experience of the clinical team delivering the care

Patient navigation is inspiring and rewarding work that has been extremely successful with oncology patients. We are on a mission to engage chronic disease navigators across the country to join us as we take the necessary steps to create a national professional organization to support this important work performed by chronic illness navigators that our country needs to improve the health and welfare of the people we serve.

AONN+ members have already begun identifying and working collaboratively with chronic illness navigators who share the same patients, whether it be a patient newly diagnosed with cancer who has a comorbid condition already or a cancer patient who develops a chronic illness during or following their cancer treatment.

As the population in the United States continues to grow larger, and once again, post COVID-19, lives longer, we need to anticipate the need for navigation will also dramatically grow.

During 2021/2022, the organizational framework of the professional organization referenced above will be created and in 2022/2023 formally launch as a separate but in many cases mirror image of AONN+, as the Association of Chronic & Complex Care Nurse Navigators.