Patient Navigators – Who We Are and What We Do

Patient Navigators and Healthcare Advocates:

Who They Are and What They Do

 By Elisabeth Schuler

Founder and CEO, Patient Navigator LLC

Founding Member and Past President, National Association of Healthcare Advocacy

Certified Senior Advisor®

Board Certified Patient Advocate

Member, Alliance of Professional Health Advocates

 Updated  July 2020

Patient advocacy, or patient navigation, has gained attention as a 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 as our country continues to struggle with how best to deliver accessible, affordable and equitable healthcare. Since the passage of the Patient Protection and Affordable Care Act (“Obamacare”) in 2010, and despite a decade of Republican efforts to repeal it, there have been positive changes for consumers in how health care is delivered and paid for in this country. The role of patient advocates has played an integral role in helping patients and families achieve better health outcomes.

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.

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.

Founded by Trisha Torrey in 2009, The Alliance of Professional Health Advocates (APHA) is an extensive professional and support organization for private, independent patient advocates. The goal of the Alliance is to help private, independent advocates start and grow successful practices, to help them maximize their reach, and therefore improve patient outcomes. It is based on the recognition that many of those people with the very best of advocacy skills don’t always have the necessary business skills which are vital to that success. We help them balance their skills between advocacy and business. The specially designed PACE program is meant for folks who want to explore a career in patient advocacy. APHA also publishes the AdvoConnection searchable directory of advocates across the country. The Alliance offers an abundance of resources on all aspects of private patient advocacy.

The Patient Advocate Certification Board

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 with the goal of creating a substantive, accredited national patient advocacy credential. This informal group became the non-profit Patient Advocate Certification Board (PACB).  The Patient Advocate Certification Board works to manage and maintain a universally recognized certification for patient/health advocates; establish and maintain relevant knowledge domains, skills, ethical standards and best practices for advocates; collaborate with healthcare consumers to achieve patient and family centered care; establish professional development for certified advocates; and promote and professionalize patient advocacy. The certification examination is now given twice a year. Successful candidates will earn the Board Certified Patient Advocate 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, APHA and PACB 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 offers a searchable directory of members on its website.  Another directory is available through AdvoConnection.  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 founding member and past President of the National Association of Healthcare Advocacy 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 June 2020, she earned her Board Certified Patient Advocate credential.

In her first career, Elisabeth worked 25 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.

Visit her Patient Navigator website and Patient Navigator blog to learn more.

You can also find Patient Navigator on Facebook and Twitter @PatientNavigate and LinkedIn

Updated July 2020