The History of Patient Navigation, Healthcare Advocacy and the Creation of NAHAC
By Elisabeth Schuler Russell
Founder and President, Patient Navigator LLC
President, National Association of Healthcare Advocacy Consultants
What is the origin of patient navigator and advocacy?
Patient advocacy, or patient navigation, is gaining attention as an emerging profession, both in the media and in the popular lexicon, because it fills so many gaps in the current American health care system. This is especially true today as we begin full implementation of the Patient Protection and Affordable Care Act, which portends considerable change for consumers in how health care is delivered and paid for in this country. Patient navigation was considered an important component in healthcare reform as discussed by oncologists in this article.
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 underserved 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 and they work for the hospital. They usually also only refer to services within the hospital system that employs them.
Most recently, 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 eight 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. More people are learning that they can hire an advocate or navigator to help them with their medical problems, to overcome obstacles in the healthcare system or to find resources in the same way that people now seek out personal trainers, life coaches, financial advisors or other “guides” whose expertise can help them 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. There have reportedly been some instances in which health flexible savings accounts were allowed to be used to pay for navigator or advocate services.
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 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 senior citizens, 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?
The majority of 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 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 Consultants
In August 2009, the National Association of Healthcare Advocacy Consultants (NAHAC) was founded by Joanna Smith, the owner of Healthcare Liaison, in Berkeley, California. A handful of early believers 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.
After holding two national conferences in 2009 and 2010, the NAHAC Executive Committee transitioned NAHAC into a non-profit organization whose mission is to professionalize healthcare advocacy and provide healthcare consumer education to the public. NAHAC became a 501c3 non-profit organization in 2011. We subsequently held another national conference in 2012. Our members enjoy access to monthly educational events and professional networking opportunities.
Members of NAHAC must abide by our Code of Ethics, which in August 2012 was cited as a model by the American Medical Association. In 2013, we are developing a model of Best Practices that we hope will be broadly adopted by the advocacy community.
Patient Advocacy Credentials
At present, patient advocacy/navigation is not a regulated profession. There is no national or state licensure. There is no nationally recognized credential for calling yourself a patient advocate or navigator. Many organizations or schools now offer “certificates” in navigation or advocacy but none of these is a national credential.
To tackle the issue of setting standards and competencies for the profession, in January 2013 a group of individuals representing various advocacy constituencies came together to undertake the task of developing a national patient advocacy credential that will be substantive, accredited, recognized and adopted. More information can be found on this group’s website. Two members of the NAHAC Board of Directors are members of this group’s steering committee, and we foresee a confluence of interests and mandates as we collectively move to build an excellent professional credential.
As with any infant industry, there is a lot of experimentation that goes into charting new territory. But it should reassure consumers that as the need for advocacy services grows, they will have a reliable way to find and screen patient navigators and advocates and that they can rely on NAHAC to assist them.
What’s in store?
It’s clear that the concept of patient advocacy is here to stay. Our challenge is to continue to build the profession, ensure its members adhere to specific standards, ethics and best practices and to help consumers who know we are and how we can help.
We can also expect the concept of guides/navigators/advocates to become an ongoing part of the healthcare delivery system, whether through private advocacy practices, new medical home models, accountable care organizations, or within the healthcare system itself. Our goal is to be recognized and understood as integral members of a healthcare team with a unique “quarterback” role to play.