The Rise of Patient Advocates: HealthChangers Podcast

May 23, 2017

Health care is undergoing a tremendous amount of change and people are becoming more involved in their health care journey than ever before. Armed with the internet and social media, people are working with their doctors to find novel solutions to daunting health care challenges. These people are often pushing the boundaries of modern Western medicine and finding effective treatments. Like the mother focusing on diet to help arthritic 3-year-old, or the family coping with chronic Lyme disease.

We’re joined by Burt Rosen, Chief Marketing Officer for HealthSparq, a Cambia company that helps peoples make smarter health care choices with industry-first transparency tools. Our other guest, Susannah Meadows, is a journalist and author who has written for Newsweek and The New York Times. Susannah recently published a book, The Other Side of Impossible, about ordinary people who faced daunting medical challenges, but didn’t give up.

Susannah and Burt have something in common—they are both patient advocates. They both have worked with, and at times beyond, the health care system to advocate for critical treatments for themselves and loved ones. In this episode, we talk with Burt and Susannah about this growing movement of patient advocates, why it’s happening now, and what it’s like to be an advocate.

To build awareness about patient advocacy and patient experience, Burt has created a conference called What’s the Fix?, happening June 14, 2017. Susannah will be a keynote speaker. You can attend this free conference in Seattle at the Cambia Grove, or via livestream.

You can listen to this episode with the player above, on iTunes or on Stitcher, or read the full transcript below.

Links and Resources

Jeremy Solly (JS): Welcome to the HealthChangers podcast, presented by Cambia Health Solutions, where we share real stories of health care transformation from those experiencing it and those helping them make health care more personalized. I'm your host, Jeremy.

Recently, we recorded a live episode of the HealthChangers podcast about ordinary people who are finding their own answers in the face of daunting health challenges. These people are often called "patient advocates." Our two guests have firsthand experience with this kind of advocacy. Burt Rosen is chief marketing officer of HealthSparq, a Cambia company that helps people make smarter health care choices with industry-first transparency tools.

Our other guest, Susannah Meadows, is a journalist and author based in New York. She recently published a book, The Other Side of Impossible, about ordinary people who faced daunting medical challenges but didn't give up. She joined the conversation via Skype. We hope you enjoy this conversation about the importance of patient advocacy.

Welcome, Burt and Susannah.

Burt Rosen (BR): Thanks, Jeremy.

JS: One of the reasons that we're talking to you both here today is that you're both part of an upcoming conference called What's the Fix? Right, Burt?

BR: Yes.

JS: I want to hear a lot more about this conference, but first, I want you guys to help us all understand and define, “What is patient advocacy?”

Personal Experiences with Patient Advocacy

“That was a kind of revelation that there might be an answer out there beyond what was known.”

Susannah Meadows (SM): In my case, what it was, was we had a personal experience where our son was diagnosed with arthritis when he was three and we were told he would struggle with it for the rest of his life. What ended up happening was that he recovered after we tried a kind of experimental intervention having to do with diet and, to me, that was a kind of revelation that there might be an answer out there beyond what was known. That sort of took me into this world of learning about other people who are finding solutions for themselves when no one thought there would be solutions.

JS: Susannah, you're touching on it, you are a patient advocate. This is why you have gotten into this work and writing about it. Burt, you also are an advocate. Do you want to tell us a little bit about your story, too?

BR: Sure. I think, much like Susannah, my family, we lived in Connecticut for a long time and there's a disease that is very prevalent in the northeast called Lyme disease and my daughter was diagnosed with chronic Lyme disease when she was about seven. My wife really became the inspiration for me for a lot of things that I do now. We got the diagnosis, went to the pediatrician, and at the time, lyme disease—people didn't know anything about it. They still don't, but they didn't know anything about it then, so he actually said that he didn't think that chronic Lyme disease existed.

My wife went online and went into social media, read every medical journal she could find and every treatment and found all the doctors who treated Lyme disease and really became a lay expert on Lyme disease. Not only was she able to ultimately cure my daughter and really help my whole family, even more than that, helps other people every day who are diagnosed.

I think, as Susannah said, one of the things that you learn now and that's really available to people now, patients and caregivers and parents, are these tools where they can expand their knowledge exponentially. You might get a suggestion from a provider to do X, but that provider probably doesn't know about Y, Z, W, whatever other letters you can throw out there. But like Susannah said, like diet. That's really one of the things that I saw and one of the things that's really inspired me to try to do some of things that we're doing now.

Finding Answers for Your Kids

“When you're a parent and you have a sick child, you feel desperate. I didn't start off saying, ‘I'm going to become a patient advocate.’”

JS: Susannah, can you tell us a little bit more about your background and story? You kind of touched on it that your son, Shepherd, was diagnosed with a rare form of juvenile arthritis, right?

SM: Well, it's an autoimmune kind of arthritis, not the osteoarthritis that's wear and tear. It's called juvenile idiopathic arthritis and it's not very prevalent in the U.S. I think about 200,000 children are diagnosed with it. Like other autoimmune diseases, we don't have a lot of good answers. We have medications that can suppress the immune system in order to control the inflammation but the problem with that, for us, was that it made Shepherd feel really bad and, because we were looking at a lifetime of this, I thought I had to find another answer.

Just as Burt was saying, when you're a parent and you have a sick child, you feel desperate. I didn't start off saying, "I'm going to become a patient advocate." I was very happy to go to the best doctors and get their advice. But when you become desperate, when you don't like the options that are given, I felt I had to keep looking.

That's when I heard about another mom who had had luck with her own son when she changed his diet, among other things, and thought, well, I was certainly on my own. While our doctor said he was comfortable with our trying it, he could not offer any guidance. But we decided, since it wasn't risky, we would give it a shot. I guess that was when we transitioned into being our own advocates where we were making our own decisions and we were figuring it out on our own. Then, of course, since learned that we're not the only ones.

Feelings of Fear and Desparation

“It's a really scary place to be because you don't have the information. I would have liked to have somebody hold my hand and say, ‘Here are all your options.’”

JS: You wrote an article in 2013 for The New York Times called "The Boy with a Thorn in His Joints."

SM: Yeah.

JS: I think that article kind of led your way into writing this book, The Other Side of Impossible. There was a line in that article that really struck me. I'm going to read it back to you real quick:

"But watching my son gulp them down defeated me." You're referring to the prescription he was given. "It reinforced an image of Shepherd as sick, forever dependent on a drug I felt afraid of, however unreasonable a doctor might tell me that fear was."

That really, as a parent myself, that really struck me about the emotions, about being an advocate and doing this kind of work, whether it's for yourself or for your kids, in your case. Can you tell me a little bit about what is it...you kind of hit on a desperation. In that quote you hit on fear. What does it feel like, being an advocate?

SM: It's not great. It's a really scary place to be because you don't have the information. Really, I would have liked to have somebody hold my hand and say, "Here are all your options," and for there to be some good options in what was offered to me. It took a while for me to be comfortable with questioning established medicine because I knew that our doctor was a lovely person and a terrific doctor. I knew that he knew more about my son's disease than I ever would.

“Take Off Your Doctor Hat and Put On Your Mom Hat”

“You have to recognize that we have different obligations as parents. We have different obligations than doctors have.”

It took a while for me to get to a place of realizing that, even so, there might be something beyond his expertise and to sort of recognize, and it's kind of what I do anyway as a journalist, where you recognize who has what kind of information. When you're deciding how to do a story, you talk to the sources you need to talk to. You figure out who has the information.

With us, it was figuring out, okay, our doctor is an expert on treating this disease in a certain way and he's an expert in diagnosing it and probably in the risks. But he doesn't know much about nutrition and there was reason to believe that nutrition could be a factor. Another thing that was key to recognize, as we kind of set off on our own, was that doctors could not talk about something that had not gone through clinical trials and was not part of the protocol. They can't make recommendations, and that's fine. But as a mother, if it's not risky, I'm free to do whatever I want. That was a huge realization.

In fact, I had a great conversation with a researcher at Mass General. When I called him up and I said, "Here's what happened to our son. He recovered when we took gluten out of his diet. Does that make any sense to you?" He said, "Oh my gosh, that makes a lot of sense. I see that a lot." I said, "Well, when you see these patients, do you recommend they take gluten out of their diet?" And he said "No, because not everyone's going to recover if they do that."

I said, "Wow, well that's the difference between you and me, because as a mom, if there's a chance and it's not risky, I'm going to take that." Then he said, "Well, wait, I was talking as a scientist, but as a father, of course I would try it." I thought that was very interesting and I think that's a key distinction.

If you're going to set off on your own and look for answers, you have to recognize that we have different obligations as parents. We have different obligations than doctors have.

JS: I love this point that you bring up of most of the time when we interact with someone in the health care field, like a doctor, they're wearing a doctor's hat. But maybe if we ask them, for a minute, can you take off the doctor's hat and put on your mom hat or your dad hat? What would you do?

SM: Yeah, the answers are different. It's very interesting.

JS: Wow. That's great. Did you feel the same way going through being an advocate? Do you have some of those same feelings?

Moving Away from Siloed Thinking

“You don't stop until you figure out all those things and you keep figuring those things out because, honestly, there's endless potential out there.”

BR: Yeah, as Susannah said, if your child has an issue or is sick, you're going to do everything you possibly can. You're going to find every treatment, you're going to try everything that won't cause them some direct harm. You don't stop until you figure out all those things and you keep figuring those things out because, honestly, there's endless potential out there.

When you think about, okay, I don't want to get myself in trouble, but when you think about the history of Western medicine, it's very, very young. There's been treatments for conditions across the world for thousands of years, but might still have an impact on people's health today, but could, not get discounted, but your regular doctor might just not know about Chinese herbal medicine or other things like that. If those things can help, of course, you got to try to do it.

I love what Susannah said about the scientist saying, "Let me put my dad hat on." It's one of the things that we find a lot in the health care industry in general is that people forget, everybody who worked in health care forgets, that they're a consumer of health care and that they have people who have gone through health care and their parents go through health care.

It's just this really interesting world that people can really silo themselves in their role and not think about the other roles that they play in life throughout.

Questioning Doctors and Finding Solutions

“To me that's just healthy, that's not any kind of anti-doctor sentiment.”

JS: We were talking a little bit about the doctors that you guys have interfaced with in going through some of these challenges and finding solutions. I'm curious, do you think that this concept of patient advocacy, has it always been around? Has it always existed? Is it a contemporary thing? Susannah, you want to take that first.

SM: I think even when I grew up and certainly when my parents grew up, we were in awe of our doctors and we believed what they told us. It was coming out of this period where we had identified penicillin and all these sort of wonder drugs and chemotherapy, and there was this sort of "doctor as god" setup. I think that that has broken down a little bit in recent years and that's sort of opened up the possibility of questioning what doctors have to say.

Which, by the way, to me that's just healthy, that's not any kind of anti-doctor sentiment. I think the internet's a key part of this. The information is available to us, and so we can reach out to each other. For example, we can look on the government website at biomedical studies. We can do our own research. We can learn from that and we can take those questions in to our doctor.

I think the combination of those two things seemed to have had a major impact on whether, first of all, it gives us confidence to sort of believe that we might be able to find something.

But it just seems like that there's just been a shift, I think. I watch my parents when they go to the doctor and they don't even ask questions. They're so respectful and I'm all for respect, but they really believe that they really just are going to follow doctor's orders. I think that's the major shift with our generation.

Shifting the Focus of Med School Education

“You're seeing a lot more focus on design thinking…you'll have first year med students partnering with patients to solve pain points and problems.”  

JS: Burt, do you think the same thing?

BR: Yeah, I think I'd say two things. One is I think there is beginning to be a shift in the medical education side of the world too. A lot of the doctors that I grew up with, too, were taught in a specific way and that's how everybody was taught and because they had knowledge that we couldn't have, really, or didn't have, everybody did defer more.

I think now you're beginning to see some new movements taking place in med school education. You're seeing a lot more focus on design thinking, which I've seen interesting in a few different places where you'll have first year med students partnering with patients to solve pain points and problems. Some of those things are very different so I do think that, over time, as med school education starts to evolve, I think the med students will obviously evolve with it. I think that's one thing.

I think the other thing that has led to a lot of patient advocacy ... Let me go on a tangent quickly.

JS: Yeah.

Social Media Opening Up a World of Knowledge

“That opens up a complete world of knowledge, a complete world of sharing and a complete world of advocacy.”

BR: I studied European history in college and one of the things that really stuck in my head was that the French Revolution was born out of the cafés, because people had a chance to get together and talk because there was more leisure time during the Enlightenment. That led to a lot of movement and I think you're seeing a lot now of the same type of thing with social media.

Social media has always existed in some form, right, whether it was sitting in a café or drawing on a cave wall, whatever it was. But now it's so much more prevalent and it's so much easier for me to go online and say, "Went to the doctor today. God, I can't believe I have to take another 50 pills. #Lyme disease." Fifty people like it and retweet it and then respond to me because they know now that I have Lyme disease. They come back with, "Oh, have you tried this or have you gone here” or, “Oh my god, I just went through that same thing." That is a newer phenomenon.

I know Facebook is prevalent and everybody Googles everything, but if you think about it, 20 years ago, we were very much at the dawn of this age. That opens up a complete world of knowledge, a complete world of sharing and a complete world of advocacy.

JS: It's a new set of tools for us to be able to kind of connect and share information and support each other. You both went through this process with yourselves and your families and you've kind of found some things that have worked for you. Shepherd is nine now and he's doing well, I think, right, Susannah?

SM: Yeah, 100 percent.

What’s Next with Patient Advocacy

“The reason I wanted to write the book is that I felt that I just had to get the information out because I think that's how we make progress.”

JS: That's awesome. With the solutions that you guys advocated for yourselves and your families, what came of it? What happens next? Do those things get picked up and do those doctors start to think about those different ways when they have new cases? When they weren't mainstream six years ago when you were going through it, Susannah, are they maybe closer to mainstream now? I'm curious what happens next as you find those solutions as an advocate.

SM: Yeah. The reason I wanted to write the book is that I felt that I just had to get the information out because I think that's how we make progress. Whether that reaches the medical world or not, that's another question.

But I do feel, and even in the course of working on the book, I have sensed more of an openness toward diet as a solution to things. And I think it's being driven by all the research that's coming out about the microbiome and how we're learning that if we don't have a healthy microbiome, which, if listeners don't know, is our population of bacteria that lives in our body. If it's not a healthy population, that's associated with all kinds of diseases: arthritis, asthma, allergies, cardiovascular disease.

The list goes on and on. We know it's a fundamental part of our health. One of the main ways we can influence that is through what we eat. I think that that has led to an openness among doctors that the solution might be connected in some way to what we eat or certainly to what's going on in our guts.

Yes, I do think there's a shift, but at the same, at least for me, this has always been my job. My job is always just to get the story out.

A Slow Shift Toward Change

“A lot of what's hopefully starting the shift is what people would consider anecdotal, and the scientific community has a very hard time with anecdotal evidence.”

JS: What about you Burt, what do you think?

BR: I think the shift is starting, but I think it's very, very early in the shift. You still see people...I have friends who think gluten allergies are ridiculous and think it's a fad diet. You still see a lot of that, despite the fact that there's a lot of anecdotal evidence that it can really help people recover. I think it's really, really early.

I think there's a lot more discussion, and there is a lot more mainstream press covering it, which helps probably more than anything else. I think it is starting, but it's going to be a while until you go to your doctor and your doctor says, "Oh, you have bad asthma. Have you thought about cutting out dairy?" I'm not sure we're there yet.

But what's great about Susannah's book and a lot of the other efforts that are going on is it's starting the conversation, but as we talk about some of these things, it's been interesting because they are controversial, because a lot of what's hopefully starting the shift is what people would consider anecdotal, and the scientific community has a very hard time with anecdotal evidence. I think it's starting, but it's going to be a process and it's going to take a while.

Inspiration Behind “What’s the Fix?”

“Consumers were always talked about as this ethereal segment who lived on an island in the South Pacific...as opposed to remembering that we’re all consumers”

JS: You brought up the conference. Let's switch gears. Let's talk about it. Burt, you had this idea a little while ago of convening advocates and I think we've kind of hit on this concept of, by connecting through the Internet, there's this support group of people around Lyme disease or around autoimmune diseases, right? Tell us, how did you have this idea of "What the Fix" conference?

BR: We all go to...well, we don't all go to, but at least those of us in the health care industry go to a fair amount of health care conferences, and what I noticed is that you would go to these conferences and the theme of the conference would always be consumerism, but you would never see normal people in the room.

Consumers were always talked about as this ethereal segment who lived on an island in the South Pacific that people had to do tons of research to access, as opposed to remembering, back to Susannah's doctor story, that we're all consumers. I went to enough of these conferences and it kind of dawned on me, "Well, what if instead of having the industry talk to the industry about making change, we actually have people who have driven change, despite the industry talking to the industry about making change?" That's how we got here.

Speakers at What’s the Fix?

JS: What is "What's the Fix?" What's happening around the conference?

BR: Sure. It's been an amazing experience, I just have to say, personally, because the people I've met, Susannah included, are just amazing people. The stories and the grit and the fortitude of people overcoming things are incredible. We have a number of people. Susannah's actually going to kick off the conference for us. We have three sessions after her, one with Dana Lewis, who actually invented the artificial pancreas for Type 1 diabetics, built it all-

SM: So cool.

JS: I believe she was just named Fast Company’s Most Creative for 2017.

BR: She built her own artificial pancreas and built it open-source. This is a quick aside, I had coffee with her last week and I said, and it was such a weird question, I felt it was so inappropriate, but I said, "Can I see your artificial pancreas?"

She showed it to me and it was, "I have the pump that sends this to this and this sends to my phone and to my watch and then the phone uploads to the cloud, then it downloads based on algorithms back to the phone, back to the pump, and then basically it's a whole closed loop system." It was like, "How on earth did you do that?" She was telling me about how her dad was an engineer. Anyways, she's speaking.

Morgan Gleason, who as a 15 year old was in the hospital and made a number of YouTube videos about her experience in the hospital that went viral, talking about things like, "Why does this machine beep? How come I can't sleep in a hospital?" She does a lot of patient empowerment.

Then we also have Fred Vogelstein and Evelyn Nussenbaum, whose son had severe epilepsy and they heard about a treatment, experimental treatments, with CBD, which was illegal in the U.S. and they went to Great Britain and treated him with CBD and saw great results and then have since come back to the U.S. and are working with a drug company on clinical trials in the U.S.

That's the morning, and then the rest of the afternoon is really what we call our "mom's time." Moms, as we've talked about a little bit, really, in my mind, are the future of health care because they don't take no for an answer, they don't this as the answer, they look for a hundred other answers. The collective is so much more powerful.

JS: What's the website where people can check out?

BR: It's www.whatsthefix.info

Making Commitments for Change

“The commitments aren't scary. They're also not "I'm going to fix health care," which is the same to say, you're not going to do anything.”

BR: It's important to us that the world starts to hear these stories and really the reason why we're doing it is because we want to try to help drive some change in the industry and one of the things that we're asking people to do as they register is to make a commitment. The commitments aren't scary. They're also not "I'm going to fix health care," which is the same to say, you're not going to do anything, because you can't, it's impossible.

The commitments range from "I'm a patient who commits to just tell my story and share my story more broadly" to "I'm a company that builds product that commits to having patients in my building once a month to run my roadmap by them to get their input.” We're going to ask people to make commitments and our hope is that as people leave, they take what they've learned and they go back and they start some of those commitments.

JS: Well, thank you for sharing that, Burt. I think that's all the time we have for today. I just really want to thank Burt and Susannah for joining us on the HealthChangers podcast and sharing their story of advocacy and also sharing about the great work that they're doing. I want to make a quick plug of be sure to check out Susannah Meadows' book The Other Side of Impossible and also look into the "What's the Fix?" Conference happening June 14th.

Share Your Own Health Care Story

“Everybody has a health care story, so share your health care stories. Talk to your doctor. Ask your doctors about new treatments.”

Burt, do you have any other takeaways that you want listeners or viewers, if they could go do one thing today to help support advocacy, what could they go out and do, maybe one of the commitments that they might make?

BR: A few things, I think. Listen, for one. Again, everybody has a health care story, so share your health care stories. Talk to your doctor. Ask your doctors about new treatments. Tell them about things you've heard of from other people and things that you've tried that might be different. Just don't give up. Don't take anything any one person says as gospel. Use your own capabilities to go out and learn as much as you can.

JS: Great. Well, thank you, Burt. June 14th is the "What's the Fix?" Conference in Seattle, be sure to check it out online.