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 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.

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

Most recently, Ms. Schuler was profiled in the August 20, 2016 New York Times.  Further media references are available here.

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

Updated August 2016

 

 

 

About Elisabeth Schuler

The curator of this blog is Elisabeth Schuler, Founder and President of Patient Navigator, LLC. Her goal is to inform readers about important healthcare topics and teach them to become informed healthcare consumers.
This entry was posted in Cancer, Caregivers, Chronic Disease, Elder Care, Government Agencies, Health Care Reform, Insurance, NAHAC, Other health issues, Patient Centered Care, Patient Safety, Problem Solving, Training, Uncategorized, Women's Health and tagged , , , , , , , , , , , , . Bookmark the permalink.

24 Responses to Patient Navigators – Who We Are and What We Do

  1. Janet Stulich says:

    I am looking for information on becoming a patient advocate. I am an LPN with New Jersey license and a past career dedicated to Hospice and Geriatrics, including nurse management and nurse education. I am one year out of chemo for breast cancer. As a single woman, living alone the cancer has financially destroyed me. Finding the correct resources in such areas COBRA payment assistance, prescription assistance, living cost assistance etc was extremely difficult for me when I was sick. After the chemo stage I couldn’t afford COBRA anymore and entered the world of charity care, medicare, social security disability and the list goes on. I certainly don’t know it all, but I have been there. I spent my career helping people die comfortably, moving forward I was like to spend my time helping cancer patients live by helping them to find the resources they need medically and financially. I have no idea how to become involved in this process and would appreciate any advice/assistance you may offer.
    Thank You.

  2. Maira Blasini Gerena PhD says:

    We are in need of patient navigators in Puerto Rico! Hope to contact the Academy in the next months. Glad to see new proffesionals that attend the real circunstances of brest cancer patients.

  3. We have a new Bachelor of Science in Health Studies degree program at ASU. I am the new Program Director. We have a course this fall titled Healthcare Navigation. We have some materials already lined out as far as the recommended reading but do not have an official textbook or required text. Do you all recommend anything? I can provide you with our syllabus or just send you our course objectives. Any information would be appreciated.

  4. Patricia Laughlin says:

    I am a breast cancer survivor and interested in finding out more about becoming a Patient navigator. Please send me any information that will help me achieve this goal.
    Thank You for your help.

  5. Lynn Ryan Hazzard says:

    I have not had cancer, but I have taken care of family and friends who have had different kinds of cancer. I feel the more people we have helping each other in this world, we can only benefit from each other’s kindness, compassion, knowledge, and love. I am interested in providing services in the Asheville, NC area, and would be interested in any information that would help me to achieve this goal. I have variety of experiences in the medical field.

    Thank you in advance,
    ~Lynn

  6. Michele Burgess says:

    I am a breast cancer survivor and would like information on becoming

    a patient navigator. I live in the Las Vegas NV area.

    Thank You

  7. Jill Collins says:

    Would like information on becoming a patient navigator…have been helping people for years and it would be great to earn an income doing what God has blessed me to do! Three time survivor and going strong…can teach clients the ropes if given the tools! Have a sparkling Day!!!!

  8. Anna Jackson says:

    I have always loved helping people, listening to people’s problems, and have been told that I have always been a huge help to those I have talked with. I read about this program in the October 2014 issue of Women’s Day magazine and am very interested in learning if there are any programs like this in Syracuse, NY. I was diagnosed with ESRD five years ago, and to this day I am not on dialysis and would love to work with people in this field.

  9. Liz says:

    I would like to be a patient navigator.
    I have 16 years in the insurance business, 2 in long term care insurance, 12 as a medical underwriter. I was a patient advocate for my mother during her surgeries on her legs for peripheral artery disease and the her btk amputation at the Rochester Mayo Clinic. 3 years later I took care of her 24/7 during the last 3 months of her life battling lung cancer.
    I am in northern CA. If you could offer some advice, I would appreciate it. Liz

  10. I live in Southern California and have Bachelor of Science Degree in Health Science. I have worked as a Respiratory Care Practitioner for >30 years, treating patients with respiratory illnesses. I am on the board of a breast cancer organization called Pink Pearls of Hope and would not like to take courses to become a Patient Navigator/Patient Advocate now that I plan to retire next year. I find this to be a very worthy cause, giving the community assistance while navigating through the healthcare system after being told they have a chronic disease. Requiring support when making and keeping appointments, transportation to an from appointments, etc.

  11. sandy brown says:

    I am interested in becoming a patient navigator in the Charleston, SC area. My mother suffered from several strokes and passed away in 2012. I have always been a compassionate, caring person and have some healthcare background as I have worked in a hospital pharmacy and doctors offices.

    Sincerely,

    Sandy Brown

  12. Debbie O'Neill says:

    I would love to receive information on becoming a patient navigator in my area. I am a recent breast cancer survivor and would love to share my experience. Debbie -Redwood City, CA

  13. Ursula Garcia says:

    I’m a 27 yr old breast cancer survivor. I have admired the people that have helped me get thru my diagnosis and treatment. I am moving back to San Antonio with my husband and am planning to finish school. I really love people and helping them in any way I can. My purpose in life to be a patient navigator. Any suggestions on schools or degrees that would help me achieve this goal?

  14. Katie Werthman says:

    My name is Katie Werthman and I am very interested in becoming a patient navigator in my area. I live in Glenview, IL. I have my degree in Psychology and worked in the Social Work field for 12 years prior to having my children. I have worked with with individuals with disabilities, Foster Care families and was the Director of a Mentoring Program. I have been a helping hand with both friends and relatives through their cancer treatment and recovery. I have a passion to help others during such a difficult time. Please contact me at your earliest convenience and let me know how I can start the process. Thank you, Katie Werthman

  15. odell lewis says:

    i am a prostate cancer survivor, for the last 6 years i have been doing volunteer work with the Jamaica Cancer Society here in Montego Bay Jamaica
    doing outreach work to raise awareness of the importance of prostate cancer screenings and conducting screening programs
    i am very interested in your program

  16. Elaine Chan says:

    I am a breast cancer survivor and would like to explore to pursue a career in medical field. I would like to find out more information on patient navigator and what is the requirement to become one.

  17. jessyka burke says:

    I am currently in a role of patient navigation for an entire msk service line at a public hospital in kirkland, wa. This is something that I am extremely passionate about and feel that it should be offered to all patients no matter what they have going on. My question is do you have a steering committee for patient navigation, I would love to be apart of it and spread the word of the need for patient navigator’s across the world.

  18. Seniors are in need of help to navigate the complicated waters of the healthcare system. Patient Navigation is a much needed process to help reduce readmissions and to provide continuity of care. If your in Florida and need more info see http://www.seniorlivingresolutions.com or our app on Apple or android.

  19. Hi Katie Werthman. I’d be happy to help you. Reside in Chicago, IL. Jessica@viphealthnavigator.com

  20. I am interest in increasing my knowledge as patient advocate. Presently, I have years of experience in healthcare and certificate in patient care navigation. I reside in Brooklyn, New York,

  21. Joan Bullwinkel says:

    I am very interested in becoming a Patient Navigator. I have experience in helping patients through chronic diseases such as cancer, Alzheimer’s ALS, renal failure and congestive heart failure.
    I truly appreciate the need for people serving as Patient Navigators and would like to put my experience and strong interest in the field to assist others. I currently have certificates in Geriatic Care Management.
    Please advise me of any educational programs offered in this field and how to become a Patient Navigator.

  22. Pingback: Becoming a Patient Navigator | Patient Navigator

  23. M. Milton says:

    Hello,
    I am interested in focusing my purpose and career for patient advocacy. This information helped me understand the extension of advocacy that was excellent in helping our patients and loved ones during such difficult times.
    I took care of my late mother (was the sole, primary caregiver) for 8 years where she was battling stage 4 stomach cancer. She was truly my inspiration to help those who really will benefit with someone that can help navigate the system for them.
    My background is with nursing. I received my RN, BSN in 2000 where I practiced as a nurse for several organizations, including a cancer center for 6 years. I attained my Masters (MSN) degree in nursing leadership in 2015 and am currently in a doctorate for nursing practice (DNP) in leadership.
    I look forward to learning more about this and hoping to contribute in making this a profession that is vital for our patients in the system. Thank you.

  24. I am a Union Rep and was recently asked to speak at our upcoming open enrollment and informative town hall health insurance meeting. The reason for me speaking is to get more employees to participate and take advantage of the health benefits. We have some pretty high deductibles and the company offers Incentives for participating in these programs , like $400 for taking a Bio metric screening and $400 for taking an online survey and $400 for participating in other activities. Do you think it is wise for me being a Union Rep to try and get people to take advantage of the these benefits?

Leave a Reply

Your email address will not be published. Required fields are marked *