Featuring a Candid Interview With an Advocacy Visionary & Trailblazer

Introduction:

After decades as an ICU nurse where she bore witness to the failings of the healthcare system, Karen Mercereau, RN, iRNPA made a defining decision that laid the groundwork for the field of Independent Patient Advocacy.  She left clinical nursing to focus her attention on developing a new practice model designed to safely guide patients through the challenges of a broken system. As a pioneer and educator, Karen’s science-based iRNPA curriculum has served as a roadmap for hundreds of nursing professionals who apply her integrated approach to advocacy on a daily basis. 

Host:

Karen Mercereau, thank you so much for being on the Patient Advocacy Now podcast. I'm really excited to talk to you because you are a pioneer. You're one of the trailblazers in this space, if not the trailblazer. And a lot of people who listen to this podcast still aren't really familiar with how advocacy started in this country, what it entails. And obviously there's different splinters where it's kind of gone off and been different things. Tell us your story. What was your role? Kind of give us your whole story of how it started.

Karen Mercereau:

Well, thank you for this opportunity. After 34 years as a clinical nurse in every type of ICU, I decided to do something different. I was working pediatric ICU and I quit my job because I had been tracking the downhill spiral in the healthcare system in the country, and I decided that somebody needed to do something, and in fact thought that people need somebody like me to advocate on their behalf, guide them through the system, teach them how to work with their doctors, etc. and educate them. So, I thought somebody must have thought of this ahead of me and they can teach me… 

Host:

Can we take a quick pause just for a sec? You said something that I think needs a little further elucidation. When you talk about a downward spiral in the healthcare system, tell me more about that. What were you seeing that was so alarming?

 Karen Mercereau:

Well, Johns Hopkins pointed out that medical errors were the third leading cause of death. The level of health literacy in the United States, according to a national study from the National Academy of Adult Learning, was 12%. A few years later, the National Academy of Medicine published a study demonstrating 12 million misdiagnoses a year at the cost of $750 billion. Hundreds of thousands of people were going to the ER because of pharmaceutical error…

Host:

So it was a litany of things that was just, it was like

Karen Mercereau:

Oh,I could go on and on and on. It was time to do something and nobody was doing anything about it. I looked all over the country looking for a partner. There was none and I am a cliff jumper and I thought I'm just going to do it. Of course I knew what needed to be done but I didn't know how to do it. So here's what I did. I put up my first baby website and got replies from the planet. Fom the Middle East, from Europe, from Canada, and of course from all over the US. And, I decided to work just in the US, that's my country, and I spent seven years working with clients all across the United States to design the RN patient advocacy process, which stands alone. There's absolutely nothing like it. I knew I would eventually teach. I put on my first beta test course in September of 2009 down in Orlando. And a couple of weeks later, I was speaking with Dr. Joan Shaver, the Dean of the College of Nursing at the University of Arizona at that time. And she said, would you please come in here and tell us what you're doing?

 So, I sat for two and a half hours. I gave him chapter and verse, silence. At the end of that, the Dean turned to me and said, Karen, this sounds like a new practice model. Yes, that's exactly what it is. And she said, and here was the gift. She said, would you consider partnering with us? Now, why is this important? The College of Nursing at the University of Arizona is one of the top colleges of nursing in the nation. And, to have them at their request partner, not financially, but development wise was huge. And so for 10 years I was hand fed advanced teaching techniques, program development, incorporation of more tech. in teaching and I met with the dean every month for two to three hours. I met weekly with one of the leading RN PhDs weekly, and here we are. The program is now eight months long. It's all online and we're all over the country. I am starting another class, class 16 next month. 

Host:

What are the prerequisites for your program?

Karen Mercereau:

Prerequisites are you have to have five years of clinical practice, hopefully varied, so you're not just in one area. And you have to fill out a several page questionnaire, and then you get interviewed by me. 

 Host:

You interview everyone one-on-one that comes into the program? still? 

Karen Mercereau:

Oh yeah,

Host:

Wow.

Host:

It doesn't get more hands-on than that.

 Karen Mercereau:

Yeah, well, I do turn people away, usually telling them, “Here's what you need to do and come back and see me in a year.” But, the people who come to this program are very highly qualified. They're very bright. They are looking for the next way forward. They recognize all the problems. And that's who we want. We want the cream. We're looking for the cream.

Host:

What are you looking for? Can you get even more specific? If someone applies and you do that one-on-one, why might you turn them away? 

Karen Mercereau:

Well, if they don't know how to write, this is a three or four page questionnaire and an essay test. And, if you don't know how to write, then you're not gonna do well in this program. So I send them to the community college, learn how to write, come back and see me in a year.

Host:

And why is it so heavy writing? Is that something you do a lot of as an advocate? 

Karen Mercereau:

Absolutely. You need to be writing to physicians, you need to write to hospital administration, you need to be writing to your clients and we call them clients, not patients, to your clients and to their families. You're writing all the time. Yeah, you have to know how to express your thoughts clearly, concisely.

Host:

Such a good point. And I'm not an advocate, I'm obviously a supporter, but I never thought of that. There's so many moving parts, the written word is gonna be the backbone of a lot of that kind of centralizing the information and coordination, it sounds like.

Karen Mercereau:

Yes, and then also you have to be a good communicator. You need to understand critical thinking. You need to understand change process, because you're going to be taking your clients through change and you need to know how to manage that. It can be very frightening for people. You need to be a team player. RN Patient Advocates put together teams. I'll give you a little tiny story.

I took a patient in January, 2013, a gentleman who had stage four, very aggressive lung cancer, and typically two to two and a half years lifespan when you get that diagnosis. We kept him going for eight and a half years with quality, where he was still traveling the country, visiting family. How did we do that? The team. RN Patient Advocates have to know not only how to work with clients and families and doctors and hospitals…You have to know how to put together teams and then manage the teams. And with him, it was mainstream oncology, radiation oncology, naturopathic oncology, nutrition, several, several, there were at least eight of us on the team. And we pulled him through for a long time.

Host:

Let's back up a second.  It was interesting when you kind of opened Pandora's box and showed the University of Arizona, and they said it's a new model of practice. What is the model of practice if you had to sum it up? Because a lot of people are still trying to wrap their head around what advocacy is, and I think going to you, you're the source to define exactly what it is and how it interacts with the end client.

Karen Mercereau:

Our mission statement is to advocate, to educate, and to guide through the healthcare system. An independent RN patient advocate has an incredible range of possibilities for working within the healthcare system and in all of those areas, advocacy, education, and guidance. Also, an RN patient advocate can have many different kinds of practice. Some people choose a generalist practice, some people specialize. There's one specializing just in the grown children of aging parents, another one in cardiac, another one for oncology. I mean, you can build your practice to reflect your own desires, to reflect your own passions. So it's not one size fits all. 

Host:

So, one of the many benefits to the advocate is that they might have a wider playing field and they get to choose the type of work that interests them and that they're passionate about. That's part of the exciting part about it, right?

Karen Mercereau:

Yes, absolutely. Also, nursing has what is called a compact state. And, there are and that means that if you have a license in one of those compact states, you are free to practice virtually or in person in the other 21 or 22 states. 

Host:

Do you see any emerging issues with the advocacy space that you'd like to see go in a different direction, or do you see any interesting advancements that you think are really exciting?

 Karen Mercereau:

Well, I'll address the first part. The problem, as I see it,is  that all the leaders in advocacy… we all know one another… we're in touch all the time. The problem is that there's a great deal of competition in the field of patient advocacy. We all wanna do the same thing. Why are we fighting? Why are we competing? Why not help one another? For example, many patient advocates now are not nurses, so they don't have the clinical knowledge base.Why not consult with one of us for a couple of hours? We're not gonna take your case over, but we'll make your case a lot better with our clinical knowledge base. 

 And, then there are billing advocates. Why not work with one of them to help your clients with their billing issues? You can't be good at everything. Let's work together to make this country safer. I mean, the healthcare system at this point is just a ka-ching. It's all about money. It's not about health. Doctors are leaving the field. Nurses are leaving the field by the thousands. By the end of this decade, the estimate is that there will be a shortage of clinical nurses of 430,000. And so those nurses, we have to catch them. Because if we don't, that's like throwing gold in the trash. I mean, these

Host:

Why do you think so many nurses leave?

Karen Mercereau:

Pay, politics…They have to work a lot of hours that they hadn't planned on. They have families, they're not getting time off. It's very, very difficult. And, what really brought it to a head was the pandemic, when they had much, much greater calls upon their time and expertise and they just burned out and they're leaving the field. People don't wanna pay nurses. Who do you think does all the work? Who do you think, the docs aren't there all the time, who's the eyes, the ears, the brain in the hospital? It's us.

 Host:

And you mentioned something before we started rolling about nurses being at the forefront throughout history. Tell me a little bit more about that.

 Karen Mercereau:

Okay, back in the end of the 19th century, the beginning of the 20th century from Europe, particularly Western and Northern Europe, we had an influx of millions of immigrants. And they were landing in the tenements in Chicago, in New York, in those big cities. Now, In the tenements, we had very high levels of infant death, diphtheria, cholera. I mean, it was atrocious what was happening. 

So it was a nurse who stood up and created public health nursing. And that was at the turn of the 20th century. And then, traveling a little bit ahead, let's jump all the way to the early 1970s. There were not enough primary docs in the country, and people didn't know what to do, and they were being tossed from pillar to post and so what did nursing do? We created nurse practitioners, who are now holding a big piece of primary care and doing so very effectively. 

And then 10, 12 years later the healthcare system, the medical system, we'll call it, created something called managed care. What's that? Nobody knew what that was. Nobody knew how to do it. And so what did we do? We created the whole field of case management, RN case managers who could make this work. And now, in the face of all of the trauma that people are experiencing in the healthcare, in the medical system, here we are. This is the next step. This is a long, wonderful history of professional nursing in the United States. 

Host:

You know, it's so fascinating because if I had to draw a line and connect the dots, what I see as the thread that goes through here is that nurses are at the front line. They see what the problem really is. They see where the needs are. And because of the empathy for the patients, they come up with the solution. And they often spearhead it because nobody else wants to. Would you say that that's a fair assessment of what happens?

Karen Mercereau:

Yes. The medical system is about making money, making billions and billions of dollars. They are telling docs what to do and how to do it. They are telling everybody what to do. And it's not about health anymore. So the whole field of patient advocacy is booming and it needs to. People need to be aware. And, there has to be coordination and cooperation within the field of patient advocacy. There's so much that we can do.

Host:

I love the way you said, why not get a billing advocate or why not get someone who's more qualified on the clinical side? That's about building the team that you were talking about. 

Karen Mercereau:

Absolutely. Why not work together? Everybody needs help. You know, when I mentioned the health literacy being so low, what they found is that, and they repeated the study in 2016, the first one was in 2004, what they found is that people with higher education and more money were more health literate. Really? Not a surprise.

 But the fact is people don't know what a pancreas is. What is a thyroid? What do ovaries do? What about the brain? Come on. So, another requirement for patient advocates is to be a life learner. You have got to follow exactly what's going on. And in order to help within the RN patient advocacy community, I've created something called the RN patient advocate national network. where we send out. specific articles, mostly about science, to help them in their practice. And then once a month, we do an educational program to help them with their practice. 

Host:

What are some of the growing pains of someone who's a nurse who wants to become a patient advocate?

Karen Mercereau:

Nurses are not business people. That's why in the program that we've got going, there's a tremendous amount we cover marketing, how to do your marketing plan. We have two huge modules on starting your business. We have panels from nurses who are doing this. You can talk to them and we tell them. resources within their own community where they can go for free or almost free to help them build their business. 

 We also suggest that they put together group practices with a business advisor. There are lots of ways around this. Is it scary? Yeah. When I began, I had no business experience, Zippo. And so I went to the Small Business Association and they have located in most community colleges around the country something called SBDC, Small Business Development Center. And them working with me for a year cost me 45 bucks and they helped me with my first business plan and with marketing and how to make it happen. I mean there are resources.

Host:

It's like you said, well, I'm not just gonna train them how to be good advocates and leave them to fend for themselves. I want these people out in the world doing business, making change, being successful. So you've kind of incorporated that into tthe program.

Karen Mercereau:

Oh yeah. A big part of it. We are also the only program that incorporates not only traditional Western medicine, which we've been doing all our lives, but advanced science. There has been a resurgence of research into the body and how everything is connected. It's called systems biology, and it demonstrates and teaches how everything is connected. Now,in medical school, they're taught to be specialists in this and specialists in that. And, they look at one part of the body and they don't talk to the guy, looking at another part of the body. That's not helpful. You need to understand that everything is connected. 

Now, there are physicians called functional physicians who practice this way. One other thing that they do that is a real standout, they go after root cause. What's root cause? Well, so you have Parkinson's.  Why do you have Parkinson's? Is it connected to your gut? Can we do something about your gut? If you understand root cause, and systems biology teaches us this, if you understand root cause, what can you do?

Host:

You can treat the root.

Karen Mercereau:

Yes! Like for example, when somebody gets a diagnosis of cancer, rather than the first thing is, well here's what we're going to do to treat it….How about why do you have cancer? For example, in non-small, non-solid tumors like lymphomas, they're almost always tied to toxins. Why not find out what toxins are in your body that are promoting this and get rid of them? Because, there are ways to get those toxins out of your body. Oh, it's so cool. There are so many connections in your body if you understand that.

 I'm sure that you have heard of the microbiome. The microbiome…you have eight of them in your body. The biggest one of course is in your small intestine. If you do not have a properly functioning microbiome in your gut, that will affect your immune system. It will affect your brain. It will affect so many factors in your body. But, there's a way to figure that out and fix it. 

Another thing to be very much aware of is inflammation. Am I getting too clinical here?

Host:

No, I'm fascinated.

Karen Mercereau:

Okay, inflammation is based on your adrenals. And, Inflammation is the root cause of every single. chronic disease we have. In fact, it is the leading cause of death. Now what can you do about this? Well, how about we figure out what your level of inflammation is? There are a lot of lab tests that do this and many are already covered by insurance.  Yeah, find out.  There are many ways to address the level of inflammation starting at the cell wall level going full bore through your whole body.

Host:

I think what's interesting is once you become a trusted advocate for a client, they're probably going to turn to you for just about anything, right? Because, you become almost the first line of defense of, well, let me just, let me call my advocate before I kind of run around in circles at the hospital. So, being able to find and source the quality information that can get you on the right path. it becomes integral as a skill set for an advocate. Is that right?

Karen Mercereau:

Absolutely. And you mentioned something. It is our responsibility also, because we're not going to be with them forever, to teach them a lot of how to advocate for themselves. In fact, one of the things that we do, and I started doing many, many years ago, is go out in the community and teach people. And, you know, this, I do this for free, we all do this for free. You go out, and teach people why and how to be your own health advocate. What the heck is gluten? I mean, how do you deal with cancer? What are your possibilities? Go out and teach. People need this information and they need to know how to take care of themselves after you're gone. And that's our responsibility also.

Host:

I think the buzzword that I've heard so much in the culture today that kind of sums up some of the approach is this holistic, treating the whole person. Would you say that it's a, I know that sometimes it feels a little too airy-fairy to say holistic, but there's a root there of the idea of treating the whole person that really does have a lot of validity to it.

Karen Mercereau:

Well, it's a very interesting word you'd pick, holistic. I tend not to use it because it means about a hundred different things to different people. And, so words, semantics are very important. What, you know, integrative medicine, which is a wonderful, you know, type of medicine, what that means by holistic is different than what nutritionists call holistic. And you just have to be aware of who's talking and what they mean.

Host:

I think that's a good point. So, it's not a useful term because it has so many different definitions.

Karen Mercereau:

Right.

Host:

If you could hange one thing about the future of advocacy, what would it be?

 Karen Mercereau:

Pulling more qualified, experienced clinical nurses into the field and giving them all the tools to go out there and make change and help people. People are dying. I mean, I'm serious. 12 million misdiagnoses, are you serious? And you know what? There's a reason for that. Wanna take a guess what it is? Go ahead.

Host:

Uh….Tell me the answer.

Karen Mercereau:

Okay, the answer is information. Medical records are scattered all over the place. We've got electronic health records and we got a few different kinds of that. And we've got written records and we've got hospital records. And the reason for the misdiagnoses is the prescribing physician does not have accurate scientific information about that patient sitting in front of her or him. 

 Host:

So you have to be a lifelong learner. You have to have a little bit of an adventurous spirit to kind of go into business for yourself. You're probably burned out a little bit, right? As are most nurses, it sounds like. Are there any other qualities that you think make a great advocate that I haven't listed?

Karen Mercereau:

The ability to communicate clearly to many, many different types of people and organizations. The ability to build teams and manage them. The ability to help your clients and their families manage change. It has to be part of your practice to do something called critical thinking. Critical thinking means you take in all this information, what's garbage, what's not, and how do you make that decision? You have to know how to do that. It's gotta be part of your active daily practice. I mean, those are just some of the big things. You have to be excited about what you're doing. If you're passionate about patient advocacy, then this is for you. If you're not, then stay where you are or possibly become a coach, yeah?

 Host:

Well, I can't thank you enough for sharing all your wisdom and the vision of everything that you've put in place. If someone is interested, who's listening, who's a nurse, what's the best way to kind of learn more about your program?

 Karen Mercereau:

Go to RNpatientadvocates.com, plural on the advocates, RNpatientadvocates.com. That'll tell you what's in the program, it'll tell you about the network, it'll tell you how to apply, it'll tell you everything you wanna know about this program. And also give you a way that you can apply and you can also just email. And all those emails come to me and my team. So, you know, you wanna find out more, that's how.

 Host:

Thank you so much. Karen Mercerow, you are a guiding light. Thank you for being on the program.

Karen Mercereau:

Oh, thank you for this opportunity. Thank you.

Host:

Awesome.