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Lots of people ask me about patient advocacy, or why I’m a Patient Advocate, and what it is exactly that I do. I will tell you that plenty of people lean in as I begin to talk about the history of our very young profession.
Today‘s agenda includes a Lesson, a Blessin’ and a Challenge.
It’s been a while since I shared with you about the profession itself, so I’ll cover that today, along with the many things that I and Patient Advocates can do to assist people who are struggling.
Relative to the history of patient advocacy (the Lesson-part): The views expressed in this piece are not full of citations and references to history. Chalk it up to folklore, maybe, albeit interesting folklore. Or As Nancy Sees It. Take what you need and leave the rest. How’s that for a disclaimer?
Lesson, Blessin’ and Challenge
Patient Advocacy is a very young industry. I believe much of it stemmed from the patient rights movement of the 1970s and The Patient Bill of Rights which was adopted by the American Hospital Association in 1973. It prevails today as The Patient Care Partnership and outlines our rights as patients when in the hospital.
The first patient advocacy, and that which you may be familiar, was itself hospital-based. First called Patient Representatives, they were operating in large teaching institutions, and that linked hospital care with medical information. Patient Advocates that are hospital-based can really get things done. They do, however, work for the hospital, which is sometimes problematic in that their voice may be bound by employer policy and paycheck. Another issue is the fact that when you are discharged, “they stay there. and your go… where?”
I believe that independent Advocacy’s genesis was with social movements in America.
At first, we witnessed (or took art in) advocacy for a cause, the causes being the formation of disease-specific non-profits like The American Cancer Society and The March of Dimes. These organizations were being formed to educate and advocate on behalf of patients. They shone a light on cases, research, and treatment and shifted consumers into more of a public health mode.
With that, the next phase was community organizing around health hazards in the environment and in the workplace. For example, in 1978, the Love Canal Homeowners Association was founded by those concerned about the high rate of cancer and birth defects in their community. Research was needed to determine the cause, rectify what might be happening and treat those who were impacted. As for the workplace, anyone familiar with the 1980s may remember Karen Silkwood (or perhaps you even have seen the 1983 film Silkwood that centered around health and safety violations in the nuclear industry and our response to worker safety.
There was a shift in the 1990s when hospitals and insurance as industries were both booming. Around that time, we as consumers seemed to lose much of our power as patients. We had long adjusted to going somewhere, reporting to somewhere, for our care. We became patriarchal as consumers. I’m not necessarily referring to a gender issue here, but that we as patients fell into accepting or doing whatever the provider said without question (or add to that without education, conference, or discussion, perhaps).
2009 is when it really all began for independent Patient Advocates as spurred by the formation of two of our organizations: APHA (Alliance of Professional Health Advocates) and NAHAC National Association of Healthcare Advocacy Consultants). Their search-by-zip code directories, for which many are very grateful, have helped countless patients and loved one find remedy. Since then, there are many more ways to locate us, and I will provide some links below this article.
Early on, and is still the case today, most Patient Advocates were independent practitioners, separate from the hospitals. Most were formerly RNs and social workers. I will speak to our expansion in a moment.
There was great interest in this new field, along with a growing need. By 2010 almost two dozen entities offered certificate programs and workshops and advanced degrees in Patient or Health Advocacy, such as Sarah Lawrence College, UCLA, and the University of Toledo. Time passed, and in 2015 there was still no nationally or internationally recognized certification or credential for independent Patent Advocates. We relied on a Code of Ethics and were held together by something called The Allegiance Factor, as coined by Trisha Torrey, and it is important.
The Allegiance Factor is allegiance based on who is producing the paycheck.
Independent Patient Advocates are paid directly by the patient or the patient’s caregiver and have only one allegiance – to the patient. The patient’s needs, whether they be medical, navigational, financial, or locational – are the prime concern of the independent Patient Advocate. Period. Be wary, and be aware that your (sometimes considered “free”) advocate or cancer navigator, or insurance case manager might have a bias or limit to their voice – based upon where their paycheck is coming from. Become aware.
As an exploding profession, we moved toward developing a certification that would further support our ethical standards, competencies, and best practices. As you may imagine, it takes a while to develop a certification exam. That, too, is a process. March of 2018 saw the first cohort of Patient Advocates to pass the exam to earn the credential BCPA, Board Certified Patient Advocate. New cohorts continue to sit for and pass this exam twice annually.
I and now many others are performing independent patient advocacy in addition to those with the BCPA certification. I laughingly will tell you that many Advocates already had “16 letters behind our names” that cited credentials and education.
I’m not as much a big fan of the letters behind a name as credentials as I am for, first, high ethics and integrity, and secondly, finding the best person for the job. So don’t get all hung up in credentials, I don’t. While I do note credentials, I am really looking at the experience, the integrity, and who can best serve. (That’s an important phrase to me, ‘best serve’, and you will see or hear me emphasize it).
That brings us up to present day, sort of. We are still a young industry when compared to many healthcare professions. This is also where I will begin to invite folks into our fast-growing world. Let’s continue, and read carefully if you are finding yourself looking for how you might join in and serve.
Lesson, Blessin’, and our Challenge
So, who are Patient Advocates now? In an industry that began largely as nurses and social workers, we remain largely so. To the ranks, we have added physicians and PAs (Physicians Assistants), and NPs (Nurse Practitioners). Pharmacists, and attorneys, and paralegals joined the ranks, and here is a good segment: insurance professionals, the folks that can untangle your medical billing disputes and appeals.
Like any other industry, we, as Patient Advocates, can specialize or niche. Our skills and experience may lend themselves to the benefit of a particular population. It is what we are good at, known for, or what we are being called upon to do. For example, many of us, myself included, are heavily in Elder Care. Since the 14-year Baby Boomer demographic is in the middle of their advance into senior citizenship, that is what is” presenting”. You will see folks further their specialties by serving both older adults and their adult children (there are two populations to serve, right there) by specializing in dementia care.
There’s the cancer arena with everything from early diagnosis to the specific kinds of cancer and understanding treatment options. Other chronic conditions or the multiples of chronic conditions also present an opportunity for specialty. You can bet if it is needed, then someone will sooner or later work to remedy. Think pediatric advocacy, or mental health, or serving developmental disabilities. You’ve heard of Birth Doulas? Here come End of Life Doulas
Then many times, our specialties also combine or touch. For example, think about planning for elder care when the adult child who has a developmental disability will now outlive their parents due to improvements in healthcare in general. Special planning, two generations, two populations.
There are many opportunities in patient advocacy and in growing the profession. Although primary, it is not just the function of one-on-one or one-to-many patient advocacy services that occur. There is a tremendous call for healthcare education, some advocates having enlisted into becoming “the Face, or Voice Of”, or the spokesperson for a particular disease or challenge. We have need for legislative advocacy. Train The Trainer advocacy. All kinds of advocacy, and in many forms.
Lesson, Blessin’, and invitational Challenge
Our industry demands much of us in terms of the advocacy itself and in terms of fast growth. For anyone with any interest, let me just say We Need You. There is a place for you here, in service, directly, or in support capacity.
Think about it. We need the Patient Advocates and the educators, yes. We also need the people that are developing the platforms for information and to manage our casework and operations, the tools we use. We need massive education about how stuff works and what options are for someone’s diagnosis and treatment, and the pathways to get there.
We need social media so as to be located and accessed by the general public, we need conduit. We need everybody to be on board, including that “first voice” on the phone that answers “How may I help you?” You know we’re going to need bookkeepers and “Administrators Extraordinaire” to keep operations running smoothly and help keep the doors open for the many.
Let us not forget thought leaders, we need them too. They author the books and post the provocative information online, they guest on radio and TV segments, and they sit in front of hospital executives and elected officials to fight for the one and the many.
Lesson, Blessin’ and Challenge
Allow me to take a moment and declare where I am in this massive network of services and goodness. Let me just say that I love it. My work as a Patient Advocate began in 2013, and I can honestly and heartily tell you that I have never looked back.
I have happily, stubbornly, doggedly been a sole practitioner, performing what I call “kitchen table advocacy” (sacrosanct, I tell you. “Good Work,” as my friend and elder law attorney likes to call it). I have been an Adjunct Instructor in higher education, writing and delivering my coursework such as “A Consumer’s Guide to Patient Advocacy”. I have spoken at faith communities, support groups, workshops, and now the national stage.
Here is one for the books: I led a small-but-mighty agency and a heckuva lot of confused and hurting folks and their loved ones through a pandemic, if only in my own small way. I began to work as a coach and mentor inside my industry. In fact, I declared it to be a new form of advocacy to help new, or stuck, or stagnant Patient Advocates find new clients and grow their businesses. Still, more changes were ahead for me, and in late 2022 I closed my agency and moved.
This next little bit is the response to the What Do You Do ever-question I get. (I appreciate your interest!). Soon I will be challenging you to think about what you can do.
Since I closed my agency and relocated to a different state, several folks have expressed interest (and a lack of clarity) about what I do. I have decided to serve in three ways, using what I believe are my top skills.
Online Consulting – I now work online, in tele-health fashion, to consult with patients and their loved ones across the US. Primarily I am engaged in eldercare matters, navigation of our wacky healthcare system, solo aging, and the How- To’s of care management and planning. Communicating with your team and loved ones. How Stuff Works. A hub of information leading to more.
Coaching – A dedicated portion of my work is spent coaching, mentoring, and in support of other Patient Advocates and professionals in their healthcare small business startups. It made sense to me to try to help prepare and fan out more people to help meet the growing needs. One person can only do so much; let me assist more folks to get up and running, to get them out there to serve.
Speaking – The third thing that I am called to do is to educate, whether knee to knee with you or in a grand hall or online. I speak publicly at events and conferences nationwide to further the patient advocacy message or on timely topics like
“Healthcare navigation” – in quotations there, because to me ‘Healthcare navigation’ is a fancy way of saying “How to understand and make it through a system that’s horribly screwed up and not showing any signs of getting any easier.” Sorry, but that’s the way it is. Don’t kill the messenger. Some might say that I have job security along those lines.
Communication – I teach about communication, and that is an umbrella term for anything from why we do or do not. Then how: everything from how to talk with your providers to crafty lead-ins to difficult conversations. Hard stuff. Tricky stuff. Tender stuff. Heart-felt stuff.
Decision-making – Not so much the decision itself but how to make it. What are the factors and impacts, and pros and cons, and how to think about it all and to take action? For instance, rather than the topic of ‘Aging in Place’, you will find me speaking on how to make the decisions about the housing that is right for you so that you can plan. How to self-assess so you will know the fit and find it. What are the angles, what are the options, and what are the considerations so that you can be a savvy consumer who goes on to make your best decisions?
Lesson, Blessin’ and your Challenge
It seems I’ve given you plenty of Lesson, and I have touched on the I’ve-never-looked-back Blessin’. I am truly grateful for all my opportunities. My heart is full and rich with experiences, experiences to have had and hold and to pass along to the next person in need.
There you have it, your Lesson and Blessin’ according to Nancy! Now I have a challenge for you, in fact, I brought a set of them. Here goes:
First, if you feel you may need patient advocacy, call us. Call me, I will help you get where you need to be with the advocate that you need, or I will help you to know how to find us. (See also #2 below)
Secondly, if you want to be a Patient Advocate, talk with some of us. Read about the patient advocate certification at pacboard.org and talk with some of us. We have search-by-zip-code directories to help find us that. I will post below this article or the video that may accompany it.
Thirdly, and I am about to get as serious right now as you will ever [see ] [hear] me.
You’ve likely heard this kind of question before: “Is your job one you would do even if you weren’t getting paid?” If no is your reply, then you may wish to consider a change. Begin to ask yourself: What are your talents? How have your experiences molded you and prepared you (to help another)?
As I am famous for saying (OK, famous in my mind and oft-mentioned blog), “I Am a Sum of My Parts”. Are you? I challenge you to think about what your purpose is, why you are here, and what you are doing about it.
Where is your heart, just as important, is it in keeping with you in your life?
I will close by thanking you all for the Lessons and Blessin’s because you all are that to me.
(If you’re still unclear, then I am not done with my job today. Contact me!). Nancy Ruffner is a Patient Advocate, consultant, speaker, and coach working to assist clients nationwide with healthcare navigation, the challenges of change, and toward successful aging. Offering Complimentary Consultations toward engagement. nancyruffner.com 919.626.4428
AS PROMISED! You may search by zip code, and state, and may often filter by the kind of services you are seeking-
APHA – The Alliance of Professional Healthcare Advocates
NAHAC – The National Association of Healthcare Advocacy Consultants
GNA – Greater National Advocates (Directory only, a great locator)
Solace (directory only, a growing locator)
Patient Advocacy Certification Board (is a credentialing body, but will have names of folks who have passed a certification exam by state. Find out about how to become a BCPA).