Patient navigation and patient advocacy as a new and emerging profession is gaining attention, both in the media and in the popular lexicon, because it fills so many gaps in the current American health care system.

You may have seen from my Patient Navigator website how I came to be a patient navigator (advocate, medical mentor, cancer coach) as a second career.  A March 2011 profile in MORE magazine offers more information both about my own journey and about patient navigation generally.  A radio and press interview I’ve given are posted on the Patient Navigator homepage to further elaborate on patient navigation as a new field offering services on many levels.

Key Developments

In terms of the profession of patient advocacy, the most exciting thing to have happened in the past couple of years was the August 2009 launch of The National Association of Healthcare Advocacy Consultants (NAHAC), the professional association representing private patient navigators and advocates.   NAHAC is committed to developing guidelines on best advocacy practices, ethical standards for health advocates, educational and professional development content to assure high professional standards and public awareness of those standards.

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 am Vice President of NAHAC and we have held two national conferences in our short 18 months of existence – November 14-15, 2009 in Berkeley, California and the November 4-6, 2010 in Washington, D.C.  which I chaired.  Members of NAHAC can listen to podcasts of all the speakers and workshops from both conferences.  I encourage prospective advocates to join NAHAC to learn and to become part of our growing network.

Another key development is 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 added many marketing and business development services for its members.  Trisha 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 membership for folks considering this profession.

The Landscape

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.

Hospitals

An increasing number of hospitals in the U.S. and Canada employ navigators to help patients manage their hospital stays but don’t extend services beyond discharge.  Those 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).  A hospital based-patient advocate works for the hospital which is quite different than the interests that private advocates represent.

Organizations

The American Cancer Society trains navigators in some cities to work with underserved populations.  They get funding, in part, from the NCI program to train navigators.

The National Institutes of Health, National Cancer Institute is funding several patient navigator pilot projects across the U.S. in underserved and minority areas and trains navigators working in those projects.  A Colorado hospital is one of those projects and they conduct training.

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.

Training, Certification and Credentials

Patient navigation/advocacy is a new undertaking that has really gained traction over the past three 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.  If you are considering a certificate or training program, please read the important article posted here that goes into more detail.

NAHAC foresees that there will come a day when a nationally recognized credential is required and part of our mission as the professional organization is to set the standards, best practices and code of ethics for this industry.

That being said, there are plenty of organizations and institutions offering some kind of patient advocacy certificate or credential.  Most have sprung up in the last year or two.

I am listing some of them but I have no recommendation or insight on any of them in particular beyond what folks have mentioned to me.    Here is an additional list, prepared by Trisha Torrey, that also lists training programs.

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.

The University of Wisconsin at Madison offers a Consumer Health Advocacy Certificate program.

Cleveland State University offers a Patient Advocacy Certificate Program.

The Integrative Medical Clinic Foundation and Sonoma State University in California offer a Patient Navigator Certificate Program with an Integrative Health specialty.

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.

Joanna Smith, the CEO of Healthcare Liaison who is also the President of the National Association of Healthcare Advocacy Consultants, offers training workshops for how to become a patient advocate as well as a full credentialing program for medically trained individuals.

Locally, in the Washington, D.C. area, the Smith Farm Center for the Healing Arts offers community patient navigation training.

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.  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 check out this guide.

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!

Thank you.

Elisabeth Russell, Founder and President, Patient Navigator, LLC

erussell@patientnavigator.com

February 20, 2011

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A few weeks ago, during my son’s routine 12-month check-up, his doctor and I were making small talk and it came up that I am a Cancer Information Specialist trained by the NCI.

My son’s doctor, a lovely woman whom we’ve seen before turned to me and said “The NCI?” to which I replied “The National Cancer Institute” and her reply was “What is that, some sort of Government agency?”

I was blown away.   My jaw practically dropped to the floor.   Maybe it’s naiveté, but I just assumed that all doctors, regardless of their chosen field of specialization, would have at least heard of the National Cancer Institute (www.cancer.gov)   Am I wrong?  I understand that doctors choose a special track or focus and that they cannot be expected to be fully familiar with each facet of the medical world, but aren’t all aspiring doctors introduced to each field of medicine while in medical school?

Even if aspiring doctors aren’t exposed to all fields of medicine in their education, wouldn’t someone in the medical world, particularly a doctor, know that the National Cancer Institute, created in 1937, at least existed?

I left the office a little perplexed.   If this doctor hadn’t heard of one of the largest medical institutions in the world, should I let her be in charge of my son’s health and well being?  Is this a big deal?   Am I making too much of this?   I would love to hear from others about this topic. Please comment and tell me your thoughts.

Guest Editor, Heather Matthews – Patient Navigator LLC Cancer Information Specialist

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Since I first wrote on this topic in April 2009, many people have contacted us wanting to know more about patient advocate or navigator training programs or job opportunities.   Here is a February 2010 update.

Patient navigation/advocacy is a new and emerging field.  It has come about because of the complexity, inefficiency and cost of the current American health care system.  You probably saw from my website (www.patientnavigator.com) how I came to be a patient navigator (advocate, medical mentor, cancer coach) as a second career.  You can also get a sense of the services we offer as well as the range of clients with whom we work.

The most exciting thing to happen in 2009 was the launch of The National Association of Healthcare Advocacy Consultants (www.nahac.com) .  I was elected as its Vice President and we held our inaugural conference November 14-15, 2009 in Berkeley, California.   The next conference will be November 4-6, 2010 in Washington, D.C.  and First Lady Michelle Obama is our invited keynote speaker.  This professional association is the best way to get started in the field of patient advocacy.  I strongly encourage those interested in the field to join (www.nahac.com).

There are several pieces in the “navigator” landscape.

An increasing number of hospitals in the U.S. and Canada employ navigators to help patients manage their hospital stays.  Those 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).

The American Cancer Society trains navigators in some cities to work with underserved populations.  They get funding, in part, from the NCI program to train navigators. http://tinyurl.com/ygll4ca

The National Institutes of Health, National Cancer Institute  http://crchd.cancer.gov/pnp/pnrp-index.html is funding several patient navigator pilot projects across the U.S. in underserved and minority areas and trains navigators working in those projects.  A Colorado hospital is one of those projects and they conduct training:  http://patientnavigatortraining.org/index.htm

The American Recovery and Reinvestment Act is funding additional patient navigator  positions staffed by nurses in some National Cancer Institute-sponsored community hospitals.  To learn more about these job opportunities, see the following NCI article:  “Patient Navigators Ensure Cancer Patients Get What They Need”  January 25, 2010

http://www.cancer.gov/recoveryimpact/page5

Much of this work is based on the model set by Dr. Harold Freeman in Harlem to develop community-based navigator programs -   http://www.hpfreemanpni.org/ They offer training to groups and non-profits seeking to work to narrow disparities in access to cancer care.

I hear often from folks around the country who want to become patient navigators/advocates.  The most comprehensive training program I know of is an online training and certification launched by the University of Miami on September 11, 2009.  It is called the Healthcare Advocacy Certificate Program.     For complete information, visit   http://tinyurl.com/lahzds or http://tinyurl.com/yghstk6

Separately, Sarah Lawrence College offers a Master’s degree in patient advocacy. http://www.slc.edu/graduate/programs/health-advocacy/index.html

I have learned of training at the University of Wisconsin at Madison for certificates in Consumer Health Advocacy  http://www.patientpartnerships.org/certificate.php but have heard it will be up and running in the Summer of 2010.

Cleveland State University offers a Patient Advocacy Certificate Program. http://www.csuohio.edu/ce/certificates/health/pacp/index.html

The University of Phoenix has an online program to become a patient advocate: http://tinyurl.com/yjld3ln.

The President of Healthcare Liaison who is also the President of the National Association of Healthcare Advocacy Consultants (www.nahac.com), Joanna Smith, offers training workshops for how to become a patient advocate: http://healthcareliaison.com/workshops.html.   Her workshops are open to anyone with an interest in the field but are a requirement for those considering the full Credentialing Program.  The full credentialing program for medically trained people runs either 9 months ($2,500) or one year ($3,000).  She refers non-medically trained people to the other programs in this paper.

In Fall 2010, the Integrative Medical Clinic Foundation and Sonoma State University in California will offer a Patient Navigator Certificate Program and expand the role by including an Integrative Health component.  They are found at www.sonoma.edu/exed and then click on Patient Navigator.

Locally, in the Washington, D.C. area, the Smith Farm Center for the Healing Arts offers community patient navigation training www.SmithFarm.com

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.  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.

Patient advocate Trisha Torrey recently wrote an excellent article about job prospects for patient navigators/advocates.  You can read it here:

http://patients.about.com/od/caringforotherpatients/a/patientadvocatejobs.htm

Here is a link to a separate guide published by Trisha Torrey about setting up an advocacy business:  http://patients.about.com/b/2009/03/31/start-a-patient-advocacy-business.htm

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 our virtual group as we collaborate to build this profession.  All you need to do is go to www.linkedin.com 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.  It’s a good way to stay in touch and make contacts.

Elisabeth Russell, Founder and President, Patient Navigator, LLC

www.patientnavigator.com

erussell@patientnavigator.com

Updated March 16, 2010

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Conference Addresses Issues Defining Rapidly Growing Patient Advocate Profession

BERKELEY, Calif., Oct. 13 /PRNewswire/ — The National Association of Healthcare Advocacy Consultants (NAHAC), the nation’s first professional association for people working as healthcare and patient advocates, will hold its first annual conference November 14-15 at the University of California, Berkeley Clark Kerr Campus.

Conference workshops will include topics ranging from best practices for advocacy decision-making through solving health insurance problems, working effectively with physicians, legal issues, advocacy for children, and using technology to maximize efficiency. Case studies will also be presented.

“The founding of NAHAC and this inaugural conference are major milestones on the road to formalizing our profession, creating healthcare consumer protection standards and promoting this rapidly growing field of healthcare advocacy,” says NAHAC founder Joanna Smith.

Conference presenters/topics:

Ann Tardy, Founder, LifeMoxie; Keynote Presenter: “The New World of Healthcare Advocacy — Creating It Together!”

Jeff Belkora, PhD, Director of Decision Services and Assistant Professor of Surgery in the Institute for Health Policy Studies, U.C.S.F.: “Making Good Decisions in a Family Health Crisis”

Linda Garrett, Partner, Risk Management Services: “Confidentiality and Privacy Law for Healthcare Advocates”

Gail Gazelle, MD, Assistant Clinical Professor of Medicine, Harvard Medical School: “Inside the Doctor’s Mind: What Every Advocate Needs to Know”

Maggie Radany, RN, Founder, Radany & Associates: “How to Solve Health Insurance Problems and Be a Hero to Your Clients!”

Dianne Savastano, Founder & President, Healthassist: “Bringing Bob Home: A Case Study in Patient Advocacy”

Elisabeth Schuler Russell, Founder & President, Patient Navigator LLC: “Inside the World of Pediatric Healthcare Advocacy”

Judith Stark, Principal, Judith Stark Consulting: “Harnessing the Power of Technology Solutions for Healthcare Warriors”

Inaugural members of the NAHAC Board of Directors:

President: Joanna Smith, CEO, Healthcare Liaison, Inc., NAHAC Founder

Vice-President: Elisabeth Schuler Russell, Founder & President, Patient Navigator LLC

Secretary: Ricka L. White-Soso, MSW, private healthcare advocate and consultant of FLW Living Well Services

Treasurer: Maggie Radany, RN, MPP, Radany & Associates, health insurance consultant and healthcare advocate

Representation of the Founding Members: Laura Weil, Director, Sarah Lawrence College Master’s Degree Program in Health Advocacy

NAHAC membership is open to individuals interested in healthcare advocacy.

For the conference brochure and more information about NAHAC visit: http://www.nahac.memberlodge.com

 SOURCE National Association of Healthcare Advocacy Consultants

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Patient navigation/advocacy is a new and emerging field.  It has come about because of the complexity, inefficiency and cost of the current American health care system.    You probably saw from my website (www.patientnavigator.com) how I came to be a patient navigator (advocate, medical mentor, cancer coach) as a second career.  You can also get a sense of the services we offer as well as the range of clients with whom we work.

 As an emerging industry, there is no clear definition or standard training to call oneself a navigator or advocate.   There are a handful of people scattered across the United States doing independent navigation in their own communities.  However, we are beginning to organize ourselves.  The National Association of Healthcare Advocacy Consultants (www.nahac.com) was launched in August.  I was recently elected as its Vice President and we will hold our inaugural conference November 14-15 in Berkeley, California.

 There are several parts to the “navigator” landscape.

An increasing number of hospitals in the U.S. and Canada employ navigators to help patients manage their hospital stays.  Those 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).

The American Cancer Society trains navigators in some cities to work with underserved populations.  They get funding, in part, from the NCI program  to train navigators.   http://tinyurl.com/yhswrof

The National Institutes of Health http://crchd.cancer.gov/pnp/pnrp-index.html is funding several patient navigator pilot projects across the U.S. in underserved and minority areas and trains navigators working in those projects.  A Colorado hospital is one of those projects and they conduct training:  http://patientnavigatortraining.org/index.htm   Much of their work is based on the model set by Dr. Harold Freeman in Harlem to develop community-based navigator programs -  http://www.hpfreemanpni.org/  They offer training to groups and non-profits seeking to work to narrow disparities in access to cancer care.

I hear often from folks around the country who want to become patient navigators/advocates.   The most comprehensive training program I know of is an online training and certification launched by the University of Miami on September 11, 2009.   It is called the Healthcare Advocacy Certificate Program.   Its courses run between 3 and 8 weeks and follow each other with no break except over the Christmas holidays.  There are 9 courses and the last course ends mid-July.  The total tuition is $4995 for the program (it is not paid by course).  In addition to tuition there are resource books required for each course. The anticipated total book fees is about $300 but can vary based on where the student purchases them.   For complete information,  http://www.educationmiami.com/en/packagedetail.aspx?p=100  The point of contact at University of Miami is Carol Wilson at 305-284-6600, carol@miami.edu

Separately, Sarah Lawrence College offers a Master’s degree in patient advocacy. http://www.slc.edu/graduate/programs/health-advocacy/index.html

I learned recently of training at the University of Wisconsin at Madison for certificates in Consumer Health Advocacy   http://www.patientpartnerships.org/certificate.php

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.)  There is no specific background or education that is required.  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.  Here is a link to a guide published by Trisha Torrey about setting up an advocacy business:  http://patients.about.com/b/2009/03/31/start-a-patient-advocacy-business.htm

I am currently talking with possible navigators from across the U.S. to try to connect us.  To that end, I have formed a virtual Patient Navigator working group through LinkedIn, the professional social networking site.  Please consider joining our virtual group as we collaborate to build this profession.    All you need to do is go to www.linkedin.com  set up a profile and then ask to join the Patient Navigator group. 

 Elisabeth Russell,  Founder and President, Patient Navigator LLC  www.patientnavigator.com

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As many of you have observed, “patient navigation” is a new and emerging field which has come about because of the complexity, inefficiency and cost of the current American health care system.  If you visit my website (www.patientnavigator.com) you will see how I came to be a patient navigator (advocate, medical mentor, cancer coach) as a second career.

I have heard from folks around the country who want to become patient navigators, but I know only of one training program/certification under development at the University of Miami due to launch in September 2009. I believe that Sarah Lawrence College offers a Master’s degree in patient advocacy (but it is theoretical, not hands-on).  The Denver hospital mentioned in the March 29 Parade article (separate post) offers some training.

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.) There is no specific background or education that is required. 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.

I am currently talking with possible navigators from across the U.S. They will be trained more formally at a later date, but for now, I am evaluating each person individually on what skills and experience (professional, personal and life experience) they can offer. I think that collectively, we need to get started to define this industry moving forward.

My goal is that Patient Navigator, LLC will be the company that creates the standards and leads the way.

I am planning a “virtual meeting” with the nearly 40 people who have contacted me since the publication of the Parade magazine article March 29.   To learn more, please contact us through this blog or the website.

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