This article was updated on October 8, 2014
Since I first wrote on this topic in April 2009, interest in patient advocacy and navigation continues to grow. I receive frequent inquiries about training and job opportunities and will try to offer suggestions here.
Patient navigation and advocacy as an emerging profession are gaining attention, both in the media and in the popular lexicon, because what we do fills in so many gaps in the current American health care system.
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. I wrote a longer piece describing the landscape of navigation in this article: Patient Navigators – Who They Are and What They Do – March 2014
In August 2009, the National Association of Healthcare Advocacy Consultants NAHAC was founded by Joanna Smith in Berkeley, California because it made sense to form a professional association for this new type of work. I was a founding member of NAHAC, its first Vice President, and served as President from March 2012 to March 2014. The Association seeks to professionalize the emerging private patient advocate industry and to educate consumers. NAHAC is a non-profit educational association. Members must abide by our Code of Ethics, which in August 2012 was cited as a model by the American Medical Association: AMA STATEMENT ON PATIENT NAVIGATORS. The Association held national conferences in 2009, 2010, 2011 and 2012. Our fifth meeting will be held October 30-November 1, 2014 in Chicago. This year’s theme is “Mastering the Power and Direction of Healthcare Advocacy.”
NAHAC membership is open to those who are interested in the field of healthcare advocacy. They may be prospective advocates, medical professionals, consumer advocates, academicians, researchers or people involved in policy and legislative efforts. I encourage prospective advocates to join NAHAC to learn and to become part of our growing network.
NAHAC also offers educational podcasts to the public to further its non-profit mission. These can provide an excellent starting point for an advocacy education.
Another key development was a company called AdvoConnection, founded by Trisha Torrey in 2009 to create a national directory of patient advocates and a way for consumers to find them. Since then, AdvoConnection has become the Alliance of Professional Health Advocates and has added many marketing and business development services for its members. Trisha Torrey has written extensively on the business side of becoming an advocate. Her recent summary of the evolving work of advocates is useful and contains other links to learn more. She offers a PACE membership for folks who want to explore this profession, and a variety of resources for starting and growing an advocacy practice.
The Patient Protection and Affordable Care Act (health care reform law signed in 2010) is now accelerating growth of both the advocacy profession and advocacy education because it mandates new consumer protection initiatives and allocates new funding to support ombudsmen and navigators. State and Federal health care exchanges that launched in 2013 include provisions for navigators to help consumers evaluate, choose and enroll in health insurance policies.
But to those just hearing about patient navigation or advocacy for the first time (and for many of you realizing that what you’ve been doing all these years has now been given a name), I want to paint a brief picture of the larger “navigator” landscape in which advocates work.
An increasing number of hospitals in the U.S. and Canada employ navigators to help patients manage their hospital stays. Hospitals usually require nursing degrees and frequently work with breast cancer patients (because there is funding available from private foundations such as Susan G. Komen).
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. This is in contrast with private navigators, who work for their client and stay with them well beyond a hospital visit.
The American Cancer Society offer cancer patient navigators in some cities, among other programs.
The National Institutes of Health,National Cancer Institute funded several patient navigator pilot projects across the U.S. in under-served and minority areas and trains navigators working in those projects.
Much of this work is based on the model set by the pioneer in breast cancer patient navigation Dr. Harold Freeman in Harlem to develop community-based navigator programs. His program offers training to some individuals, groups and non-profits seeking to work to narrow disparities in access to cancer care.
The Patient Advocate Foundation provides free services to some individuals and is also a leading voice on the national health policy stage.
The National Coalition of Oncology Nurse Navigators has brought together clinicians specializing in oncology navigation.
Many national disease-specific advocacy organizations provide some advocacy help.
Training, Certification and Credentials
Patient navigation/advocacy is a new undertaking that has really gained traction over the past five years.
The key point is that there is no nationally recognized license, credential or certification at this point in time. Patient advocates are not regulated by states nor is there any credentialing requirement for someone to say they are a patient advocate or navigator. However, a group was established in early 2013 to begin the hard work of establishing a national credential. You can read about their efforts here.
If you are considering a certificate or training program, please read the important article posted here that goes into more detail. There are plenty of organizations and institutions offering some kind of patient advocacy certificate or credential. Here is the most complete training program list of which I am aware compiled by the Alliance of Professional Health Advocates.
I am listing some of these programs but I have no recommendation or insight on most of them.
The University of Wisconsin at Madison Center for Patient Partnerships Madison offers classroom, clinical and online education in consumer health advocacy. I am personally familiar with this program and recommend it highly. The Center also provides free advocacy services locally.
The University of Miami offers the nine-month Alfus Patient Advocacy Online Certificate Program.
The oldest formal health advocacy program in the United States, the Sarah Lawrence College Master’s Program prepares students for a variety of types of advocacy careers, including assisting individuals, focusing on community health, or working in health policy.
Dr. Harold Freeman’s program in New York City offers training to some individuals, groups and non-profits seeking to work to narrow disparities in access to cancer care.
I have personally taken the credentialing program offered through the Society of Certified Senior Advisors and recommend it highly. For anyone planning to work with the elderly in any capacity, this training will help you immensely.
Locally, in the Washington, D.C. area, the Smith Center for Healing and the Arts Institute for Integrative Oncology offers community patient navigation training for integrative cancer care.
What Does It Take To Do This Work?
Most of us who do this work come to it through our own experiences dealing with the health care or elder care system (whether as a patient, caregiver, nurse, social worker, etc.) In most cases, there is no specific background or education that is required, except for clinically-based positions. I have found that a passion for helping others, good research, communication, interpersonal and organizational skills as well as the ability to be creative in finding resources and solving problems are what it takes.
However, earning a living from this work is a different story. Patient advocate Trisha Torrey wrote an excellent article about job prospects for patient navigators/advocates. My basic advice to folks is that unless you have another source of income, don’t expect to earn a living wage quickly if you set out on your own.
For more on setting up an advocacy business, you can start here.
How To Join Our Efforts Now
In order to connect folks throughout the U.S. who are interested in this field, I have formed a virtual “Patient Navigator” working group through LinkedIn, the professional networking site.
Please consider joining my LinkedIn group as we collaborate to build this profession. Just go to LinkedIn to set up a profile and then ask to join the Patient Navigator group. Please include an explanation of why you’d like to join the group. This way I can get to know allies around the country and hopefully grow our network and collaboration. It’s a good way for everyone to make contacts.
Please add your comments or additional information to this post!
Elisabeth Russell, Founder and President, Patient Navigator, LLC
Updated October 8, 2014
P.S. If you are interested in how I became a navigator as a second career, you can read a March 2011 profile in MORE magazine that offers more information both about my own journey and about patient navigation generally. Additional press articles are posted on the Patient Navigator homepage to elaborate on patient navigation as a new field offering services on many levels. In addition, there are other media references that can help you learn more about patient navigation.