What is the origin of patient navigation?
The original concept of patient navigation was pioneered in 1990 by Dr. Harold P. Freeman, a surgical oncologist at Harlem Hospital, for the purpose of eliminating barriers to timely cancer screening, diagnosis, treatment, and supportive care. Many individuals in medically under-served or minority communities were at risk because of financial, communication, health care system and cultural barriers to care.
In 2005, U.S. policymakers came together to support the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005 (Public Law 109-18). With unanimous support in Congress, and under the leadership of Senator Robert Menendez (D-NJ), the Act authorized the Secretary of Health and Human Services to make grants through 2010 for the development of patient navigator programs. A total of $25 million was awarded over five years to develop community-based navigation programs. The Center to Reduce Cancer Health Disparities was created at the National Institutes of Health.
Over the years, data from Dr. Freeman’s programs and others began to prove how valuable navigation could be to improve cancer diagnosis and treatment outcomes. For example, studies found that patient five-year survival rates went from 39% (prior to the development of the patient navigator program) to 70% for breast cancer patients at Harlem Hospital.
These types of positive outcomes have given rise to other community-based navigator efforts. The American Cancer Society, The Susan G. Komen Foundation, and the National Cancer Institute have all supported various navigator research efforts based on the success of Dr. Freeman’s model.
Another part of the navigator landscape is now seen in hospital-based nurse navigators, particularly for breast cancer patients. In most cases, these hospital-based navigators primarily manage the patient’s needs during the hospital stay and discharge planning. They work for the hospital. They usually also generally only refer to services within the hospital system that employs them. This is a key difference from what private advocates offer. We work only for the client and cast a wide net to find the best resources and outcomes.
The Affordable Care Act required that “insurance navigators” be available to help consumers research and enroll in health insurance through the law’s health insurance marketplace, the “exchanges.”
It’s no wonder that there is confusion about these definitions. Since Dr. Freeman’s groundbreaking work in Harlem, the concept of navigation or advocacy has grown far beyond cancer and essentially now covers almost anything being done to help patients and families find their way through the maze of our healthcare system.
What are private patient advocates and navigators?
Even as the U.S. Government had begun to address the disparities in access to cancer care among specific communities and populations in the past 15 years, the idea of private, one-to-one patient advocacy was born of necessity as a way to mitigate the complicated, inefficient, expensive and fragmented healthcare delivery system in the United States.
Since 2005, the concept of private patient advocacy has taken on a life of its own. My company, Patient Navigator LLC, was created in 2004 and recognized as a pioneer in the private advocacy profession. Just as many people now have
a financial advisor, personal trainer
or life coach, more people are learning that they can hire a healthcare advisor or navigator with insider knowledge and direct experience about how the healthcare system works. These healthcare advisors can help to navigate medical problems, to overcome obstacles in the healthcare system or to find resources in the same way as other expert “guides” solve problems and avoid pitfalls.
What kinds of things do patient navigators or advocates do?
Private patient advocates and navigators in most cases work directly with and are paid by individuals and families. Private advocacy or navigation services are not generally covered by insurance, despite the fact that many studies prove that better coordination of medical care saves money and improves outcomes.
The names for this work may vary (patient advocate, navigator, health care advocate or consultant, medical advocate) but the basic idea is the same. We work with patients and families to help them at many points along the health care continuum: disease research, insurance problems, finding doctors, understanding treatment and care options, accompanying them to visits, serving as coach and quarterback of their health care team, working with family members and caregivers, mobilizing resources, managing medical paperwork, transitions for aging parents and almost anything else you can think of.
Not every advocate does all of these things, and there is no single business model or list of services. Some advocates only work with older adults, others only with cancer patients or others only to solve medical billing problems. It depends entirely on the individual’s business and practice.
Who are these private advocates and navigators?
Many of the people who want to do this work come to it because they have been through a life-changing medical event, either for themselves, a friend or a loved one. They have learned the hard way how difficult it is to navigate and manage a complicated diagnosis, treatment or chronic condition. They experienced the confusion, lack of coordination, dangers and inefficiencies in our health care delivery system and now they want to share both what they have learned and how to avoid missteps along the way. In many cases, these are laypeople with no prior medical experience or training.
Increasingly, more nurses, social workers and physicians are becoming private advocates, often after having worked within the healthcare system. While hospitals will generally only hire nurses or other medically-licensed professionals to serve as their in-house navigators, most private advocates come from a variety of backgrounds.
The National Association of Healthcare Advocacy
In August 2009, the National Association of Healthcare Advocacy Consultants (NAHAC) (now named the National Association of Healthcare Advocacy) was founded by Joanna Smith, the owner of Healthcare Liaison, in Berkeley, California. I was one of a handful of early believers who realized that individuals working as advocates (or navigators, healthcare consultants, etc.) needed to come together to begin to professionalize this emerging private patient advocate/patient navigator industry and to educate consumers about its existence and usefulness.
Today, NAHAC is dedicated to the improvement of patient outcomes through continuing education, promotion of national standards of practice, and active pursuit of policy changes, leading to a high standard of person-centered healthcare. NAHAC promotes rigorous standards for the practice of advocacy including ethical considerations and codes of conduct when providing medical decision-making support. It educates consumers and healthcare professionals on research and current trends in patient-centered navigation, advocacy and decision-making support. NAHAC also partners with individual advocates and other grassroots organizations to collaborate on patient-centered reforms that maximize use of the healthcare system, protect consumer choice and improve access to high quality, affordable care.
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