Patient Navigators and Healthcare Advocates:
Who They Are and What They Do
By Elisabeth Schuler
Founder and President, Patient Navigator LLC
Past President, National Association ofHealthcare Advocacy Consultants
Updated August 2016
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 continue 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.
What is the history of patient and healthcare advocacy?
The concept of patient advocacy in the United States has a long history dating back to the beginning of the twentieth century but gained significant attention as part of the movement for patient rights in the 1970’s. The National Welfare Rights organization coalesced around a patient bill of rights and in 1972 it became incorporated into the accreditation standards for hospitals by the American Hospital Association. In an effort to professionalize the field of patient advocacy, Ruth Ravitch, a founder of the ground-breaking patient advocacy program at Mt. Sinai Hospital in New York City, along with Joan Marks who became the director of the program, established the Master’s program in Health Advocacy at Sarah Lawrence College in 1980 to educate professionals to work in hospitals, government, policy and community and private settings. Since then, many courses and certificate programs have been created to educate patient advocates to work in a variety of settings, including the University of Miami and the Center for Patient Partnerships at the University of Wisconsin.
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 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. 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. 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 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 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 2014 conference was held October 31-November 2 in Chicago. The 2016 conference will be held in Seattle, Washington. NAHAC members enjoy access to monthly educational events, professional networking opportunities and peer-to-peer advice. 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 2014, we are developing a model of Best Practices that is being adopted by the advocacy community.
The Alliance of Professional Health Advocates
Another advocacy organization is the Alliance of Professional Health Advocates, APHA. This organization provides advocacy practices large and small with the business support they need to help them get started and grow, including legal, insurance, financial, contracts, marketing, technology and networking with hundreds of care professionals. It also publishes the AdvoConnection searchable directory of advocates across the country.
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. This group became the Patient Advocate Credential Board. More information can be found on this group’s website. We foresee a confluence of interests and mandates as we collectively move to build an excellent professional credential.
As with any emerging 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 or APHA 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 know who 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” or “project manager” role to play.
How can I find a navigator or advocate?
The National Association of Healthcare Advocacy Consultants (www.nahac.com) offers a searchable directory of members on its website. Another directory is available through AdvoConnection (www.advoconnection.com). Word of mouth or personal referrals are always a good way to find a navigator as well.
What questions should I ask if I want to hire someone? What should I expect? What do they charge?
You should interview an advocate or navigator the same way you would interview any other professional you would consider hiring. Among questions you could ask are: Have they handled other cases similar to mine before? What is your background and training? How long will it take to perform the services I need? What do you charge? Do you have references? Do you provide written reports about the services you have provided? Where are you located? What are your hours? How do you communicate with your clients? What would you typically do to help someone in my situation?
Working with a patient navigator is an intensely personal relationship. You must feel that you can trust and work with that person comfortably. You should expect that the navigator will respect your privacy and that he or she is a good communicator. You may need to speak with several candidates before you feel comfortable moving ahead.
You should also expect a written contract or agreement which specifies what the navigator will deliver to you and when, as well as a detailed explanation of his or her fees and charges. Do not rely on verbal promises or commitments; get it in writing.
There is no standard fee for private navigation services. Fees can range from $60 to $250 per hour, depending on the person you interview. Based on the navigator’s track record, you should feel comfortable that you will be getting your money’s worth, as you would with any other professional service provider.
About the Author
Elisabeth Schuler is the Founder of Patient Navigator LLC, a pioneering, full-service patient advocacy firm established in 2004 to help patients and families navigate illness and the U.S. healthcare system. She is a co-founder and past President of the National Association of Healthcare Advocacy Consultants and the winner of the 2012 Patient Advocacy Compass Award. From 2011-2012, she was a member of the strategic planning task force at the University of Wisconsin’s Center for Patient Partnerships. In 2009, she was trained as an integrative oncology “Cancer Guide” by the Center for Mind-Body Medicine in Washington, D.C. and in 2011 she earned a certification in “Mind-Body Medicine” from the same organization. She has completed a continuing education course on conventional medicine at Georgetown University. In 2007, Elisabeth was trained as a Certified Senior Advisor (CSA)®. She has been a hospice bereavement counselor, launched a Parent Loss Support Group in 1991 and has facilitated grief support groups over many years.
In her first career, Elisabeth worked 24 years in the U.S. Government, 22 of them as a Foreign Service Officer with the U.S. Department of State during which she earned nine prestigious Honor Awards. She holds a master’s degree from Georgetown University’s School of Foreign Service and a Bachelor’s Degree in French Studies from the American University in Paris, France and the Sorbonne. The gift of her daughter’s survival after a pediatric brain tumor led Elisabeth to her new calling as a patient navigator so that she can advocate, educate and solve problems for patients and families.
Updated August 2016