Transcription:
Long COVID: Enabled By Social Media, Patients Define An Urgent New Need

Intro: The following SHSMD podcast is a production of Dr.podcasting.com.

Bill Klaproth (Host): On this special #MayoSHSMD Session Spotlight, we talk about citizen scientists patient groups who have been known since the dawn of the web, but never has there been as potent and urgent an example as the long COVID community that arose in desperation last year for COVID-19 patients who just weren't getting better. Their ability to connect, convene, and document their symptoms and crowdsource their data, led within months to acceptance by establishment medicine, such as the CDC, the NIH, and more. So, we're going to talk with Dave deBronkart, e-patient Dave, about his MayoSHSMD keynote, where he will discuss the long COVID community that arose this past year, the history of the super engaged patients, how social media is enabling their achievement and what healthcare can learn from it. So let's get to it right now.

This is the SHSMD podcast, rapid insights for healthcare strategy professionals in planning, business development, marketing, communications, and public relations. I'm your host Bill Klaproth. And on this episode, we talk with Dave deBronkart, known as e-patient Dave on Twitter. Dave is a cancer survivor and is a true thought leader, one of the pioneer evangelists of patient empowerment through social media. And we'll talk about his keynote at the 2021 advanced healthcare, social media and digital marketing virtual conference, hosted by the Mayo Clinic social media network and SHSMD coming up on June 8th through June 10th. Dave welcome to the SHSMD podcast. As you know, we start every episode of the SHSMD podcast with rapid insights. One quick tip someone can use to make their marketing communications better today. Dave, give us your rapid insight

Dave deBronkart (Guest): The business of healthcare today involves listening much as it involves medical science, as only listening let's you be relevant in the audience's mind.

Host: And there is your rapid insight. That is terrific. Dave, I love that. I think as a whole society we all need to do a little bit more listening. So, we're going to talk about your keynote coming up on June 8th, but I want to set the stage for that. I want to tell the story of that. So, can you let us in on what happened to you 15 years ago that led you to where you are today?

Dave: Yeah, certainly. And I'll tell you, I am a guy who 15 years ago, 14 years ago, nearly died. My median survival at diagnosis with kidney cancer was 24 weeks and I survived. It was luck, but it was also, I got excellent care, but my oncologist today says that he's not sure I could have survived if I hadn't been so involved. I did it by being an engaged patient. Even though I'd never heard that term before. What I did was I partnered with my clinicians to do my best to help them save me. And I'll tell you everybody who's heard my story really loves Beth Israel, Deaconess Medical Center in Boston which helped save my life.

And an important thing is that they listened to me and they welcomed me being on the internet. What happened specifically was that at the end of 2006, I had a routine physical, which involved a shoulder x-ray because I had a sore shoulder and totally by dumb luck, that shoulder x-ray discovered a tumor in my lung right near that shoulder. And it turned out to be a tumor of kidney cancer. So, I went from, I don't even feel like I have a problem to discovering I had metastatic kidney cancer in my lung. And in fact, I had five tumors in both lungs. I quickly started hurting all over, my leg broke from a tumor in my left femur and on and on.

Bill Klaproth (Host): Oh, my Lord. That is quite a story. So, you jumped in, you called yourself an engaged patient and you said the people at the hospital were willing to listen. So, it wasn't like they were pushing away, like, hey, we got this Dave, we're the experts. Don't try to tell us or help us. We'll figure this out. They welcomed you joining them in trying to figure this out.

Dave: Exactly. And the underlying dynamic here, which is going to be the whole focus of my keynote speech, is that what's possible in bringing the best possible information into a crisis has changed, compared to when most of us old folks were trained and educated in the last century. And this is what makes us look like foolish geezers in the eyes of millennials, because they know that information is flowing all over the place like crazy.

A really essential moment here, is that once my diagnosis was confirmed, my now famous PCP, Dr. Danny Sands, because he was a visionary and he already knew about patients being actively involved in medical science; he said to me, Dave, you're an online kind of guy you might like to join this patient group on the internet. And it turns out he knew where the world's first best patient community was for kidney cancer patients. Notice to this day, we still hear doctors saying to patients stay off the internet. I don't have time for that. Dr. Sands, didn't say stay off the internet because there's garbage. He showed me where to find the good stuff.

Host: So, there is good stuff, right? We've heard that many a times, stay off Dr. Google. It's not a good place to be, but if you know where to look, then it can be very beneficial. And that's where this term citizen scientist comes from, is that correct?

Dave: Exactly. And it's funny, Wired magazine was the first publication I saw that they had a cover story it just happened to be in September, 2001. So, there was other stuff in the news and it didn't get much attention. But the citizen scientist or going out there, people without medical training and the key thing here is if you are at the edge of medical knowledge and the doctors have no more answers, what other alternatives are possible? And these what I call super patients. They're not just engaged patients. They actually extend science. When they can pull together knowledge that extends what already exists in the hospital building, that's a wonderful thing.

Host: So, super patients are patients who extend science when there are no answers.

Dave: Particularly when medicine is out of answers. A good patient community, is well aware of the value of medical science. They don't reject medical science, but where you're at the edge of medical science, they go beyond. My community, when I joined it, within two hours told me a whole bunch of useful things that don't exist in the medical literature. Now I didn't go rogue. I brought all of this to my oncologist and for almost everything that patients online told me, they said, yes, this is valid. This matches our experience. So, again, this is the modern model is for the patient and the clinicians to be partners in extending, extending the range of possible outcomes of the case.

Another reason this is important by the way, and in the case of long COVID, which is the topic of my keynote, this is exquisitely important; is that today, empowered patients are defining for themselves what's important in their symptoms, in their goals of treatment and so on. That's why my clinician, Dr. Sands again, he wears a button, that says what matters to you in clinic because he knows that today we have such a range of treatment options. And we also, everybody knows there were problems with compliance, or patients aren't doing what the doctor tells them. Well, Dr. Sands has found that if he starts from my goals, I'm more likely to be interested in his recommendations.

Host: Hence the listening to you. And when you feel heard, don't you feel better that somebody is listening to you, that your message is getting through. Somebody understands me. So, a doctor actually listening to you and making you feel heard, that's got to do wonders.

Dave: If you went into Best Buy to buy a dishwasher, our dishwasher's broken, we got to buy a new one. If we went in there and some fool at Best Buy said look, I know what you need. I don't need to hear what's important to you. Right? Or if you went into a restaurant, the way people talked about this is the way it used to be in planned economies in the old Soviet Union and so on, they'd say all right, here's what you're getting. Right? It's nuts.

Host: It's nuts. Right? You're getting the spaghetti whether you want it or not. Hear, I'm telling you, it's good for you. Eat this.

Dave: And I'll tell you, I know everybody's under tremendous financial pressures in this industry and I truly value every single time I have a doctor visit, I express my appreciation to them for the work they do to try to practice their craft in this era of economic pressure. But that's why I said in the insight, the business of health care today, mastery of the business, optimizing the business, involves listening, as much as it involves mastering the science, itself.

Host: And an example of this listening just happened with the long COVID community which you're going to talk about at your keynote speech.

Dave: Who would imagine for instance, that the long COVID patient community, one year ago, it seems like eons ago, but one year ago, we were all trying to figure out what the heck was going on. And while we were figuring out things like pronating the patient could have avoid ventilation and all kinds of things in this unprecedented disease.

Meanwhile, there was this batch of patients that weren't recognized yet, who, after they got were released from the hospital, didn't actually get better and it was on them to document what was happening. What did they do? They Googled. And they found each other and started forming clusters. And then when they did that, they discovered some of them know how to do data and how to conduct studies. And it's just crazy that before the year was out, the NIH had recognized and published about what the patients had identified. Now folks, if the NIH is going to listen to the patients, don't you think we should?

Host: Yes, I do think that. And like, we've been talking about, listening is so important. So, Dave, how does all of this work you just mentioned, the long COVID suffers, started Googling and they found each other. Do they do this through Twitter or Facebook groups or all different kinds of social media? And then how does somebody like the NIH pick up on this and start noticing these types of groups?

Dave: So, I'm going to start with the NIH again, and this is exquisitely important. I don't have a doctorate degree. I don't work in medicine. But I am an MIT graduate. I understand the scientific method. Okay. I'm a very, I haven't done a single thing scientific since I graduated from college, but I understand scientific thinking. Any good scientist, and I learned this in high school, not MIT, is always willing to learn that something they hadn't thought of might be true. The NIH exemplified that. They were pro actively looking for what's going on out there. I mean, this is a house on fire.

What's going on and they heard about this and they checked into it and they quickly found these people are not nuts. There's something going on here and there's a pattern of evidence. Now, how do they connect with each other? This goes all the way back to the 1990s. Before there was a web, there were plain old email lists. And people with certain interests would get together by word of mouth.

The broader question here, is how do we find what's of interest to us and connect with others? A full generation ago, back in the nineties, the eighties, the seventies; the only way you could do this really is by finding people the hard way. I mean, if you remember the movie Lorenzo's Oil. That true story was the first citizen scientist story that I know of. And that was incredibly laborious. Today you go online, and if you type COVID patient community, you'll get answers in seconds. My granddaughter is seven years old, and she knows from her classroom if there's anything she wants to know about, she just Googles it.

Host: Right. There's a whole generational shift, gathering and disseminating and disbursing of information.

Dave: This is exquisitely different from the way we were trained. I was trained, careful who you trust. Because there are a lot of shysters out there and this is in anything used car sales, you name it. Well, that's true. You still need to be careful who you trust, but that doesn't mean stay off the internet. And so now we have a Facebook group. I don't remember the exact number, something like thousands of members of long COVID patients. We have another one based in New York. We have another one based in London. Anywhere that people might gather together. Some of them start projects to collect data and publish papers.

Others just become a support community. It's like, OMG, my face just fell off. What do I do? Now, I'm obviously deemed silly with that specific thing. But I'll tell you this has nothing to do with COVID, but it illustrates my point. In January of this year, I discovered out of nowhere that I have glaucoma. And this hit me like panic because I discovered out of nowhere that I've already lost 30% of the nerves in my left the eye. They're dead. They're not coming back.

This made me think precisely of my situation 14 years ago. I'm almost dead of kidney cancer. What the heck do I do now? And while I looked at all the establishment websites, I was getting advice there that sometimes these establishment websites disagreed with each other. And more importantly, nobody could tell me what different things really meant to the patient. And it turns out I found the best patient community I found for glaucoma, was on a stupid scandal website called Reddit, where people say all kinds of insane things about politics and everything else, but they also have some good patient communities there.

Host: So, even though there's a lot of shady stuff, you can still wade through that and find things that are beneficial to you today.

Dave: The point is that in the old model, when I went to college, the only dependable source for lifesaving medical information was through the medical establishment. There just was no feasible chance that you'd get that information anywhere else. I still get lifesaving medical information from the medical establishment, but it's no longer the only place, the only pathway. This is what has changed.

Host: And a change for the good, with the rise of the citizen scientists, the super patients, if you will. And then you're going to wrap all of this up. At your keynote with what healthcare can learn from all of this. Is that right Dave?

Dave: Absolutely. I'd be dead if I hadn't done this, you know, and I. There are lessons. There are takeaways. The reason I made an unexpected second career out of being a keynote speaker, now more than 600 events in 26 countries so far, is because there's a real message here.

Host: So, then what is that overall real message?

Dave: Listen, and realize that the pathways by which information travels to the point of need, are vastly different than they were a generation ago. You've got to learn. You've got to figure out how do we interact with the market differently than just putting a megaphone to our mouth and shouting.

Host: Cause what you're talking about truly can be life-changing and it was in your case.

Dave: I will tell you at time of diagnosis, this is true, makes me cry sometimes, but at time of diagnosis, I had to sit down with my daughter who had just gotten out of college and tell her it didn't look good.

Host: I just can't imagine that. So, of course, inquiring minds want to know, obviously this turned into a happy ending.

Dave: I got a granddaughter.

Host: That's a great, happy ending. So, Dave, you were given 24 weeks to live. You went online, you found a group on kidney cancer. What did you learn? Finish the story for us. How did this basically save your life?

Dave: There's a deeper issue here. Clinicians, medical scientists are disciplined to stick to what's in the literature. And that's good. But there is a thing that in I'm a co-founder now of the Society for Participatory Medicine and one of their fundamental learnings that was first documented right around the time that of my diagnosis; there's this thing called the lethal lag time. It's the time between when a piece of knowledge comes into existence in a scientist's mind, and the time it's in the literature and has been read by other doctors.

In a patient community, it's funny, Dr. Sands, my PCP likes to say, I have 10,000 diagnostic codes that I'm responsible for. If you've got kidney cancer, you've got that one disease, where you can focus and go deep and wide. So, I knew in that patient community, I knew patients who were literally talking to researchers who had projects underway, that were years from being published. I know people who extended their life by connecting with studies like this. And it's remarkable because even though a lot of studies are paywalled, we know in the e-patient and the empowered patient community, if you talk directly to a researcher, they'll often send you their paper, a PDF for free for you to share with your doctor. See, this is not me being a doctor. This is me being really an information bloodhound. And so, the treatment that I got, the patient community said, at that time, 2007, there's only one thing that ever cures kidney cancer, and it usually doesn't work. How's that for odds?

Host: Yeah. Not very promising.

Dave: And they said, it's really extreme. And if it affects you at all, it sometimes kills the patient with side effects. So, like game on I said to my oncologist, I understand that they hadn't told me this. They said, I understand the side effects might kill me, and he said that does happen. And I said something that turned out was unusual. So, how do I prepare to beat this? And he said, that's an interesting question. Nobody has ever asked us that. And so I turned to the patient community. Notice, I asked the scientists first and then I turned to the patients. And I got 16 firsthand stories. And I at least had some idea what to expect. Again, there's no guarantee, that this specifically saved my life.

But that's what he said about me afterwards. I don't know if you could have tolerated enough medicine, if you hadn't been so prepared. And that's without me being a scientist per se, but somebody doing what I could, to help my own pathetic case. So, the geniuses could do their job. There's another oncologist, I met at a Christmas party a year later, who said that he had been trained not to give patients false hope. Right? Which I know is a, it's a respectable thing. You don't want to go back to people later and say, sorry, I let you down. Well, if a patient would say, doctor, can you save me? He says, I used to say, probably not. And he would watch the life go out of them. And he said, now what I tell them is, I don't know, but we will try. Will you work with me?

Host: Much better answer.

Dave: Equally, scientifically true. Then he'd lighten it up, he'd say, but just one thing, if we succeed and you survive, you must drive carefully. I can remember being in, sitting in that crucible and I'd say, doctor, that's a deal. Well now we bring that same mind shift up here to 2021, 22 and beyond. Long COVID. We still don't understand what this disease is, but man, when you discover what the patient's figured out, and that was then validated by the NIH and other scientists and how we are together building forward. To me, that's an inspiring model for how a hospital ought to look to serve their community. And just frankly, do better than the ones who are backwards in their thinking.

Host: Well, this is eye opening. And your keynote will open a lot of eyes and ears we hope. And hopefully there will be a shift in thinking as your story has illustrated it, how it has benefited you. And I'm sure countless other people. So, just quickly back to your story. So, you said to your doctor, how do I beat this? They didn't have an answer. You went back to your community and you said you found 16 people that probably, that gave you advice. Here's how you get through this treatment. Is that right?

Dave: Yes. Each of them had been through various side effects.

Host: As luck would have it, could I even say this treatment, which they said, you know what, you can try it. It usually doesn't work. It worked. Is that what happened?

Dave: Exactly and it almost killed me. At one point, I had a side effect called capillary leak syndrome. As an immunotherapy, the walls of my capillaries all through my body opened up, all the fluid rushed out of my blood vessels. My legs I'm sitting there looking at my legs, like water balloons.

My blood pressure as a result dropped to 50 over 30. But the patients had told me, make sure you go to a specialist hospital where they know how to deal with this. And they stepped in and stopped it immediately. And I survived. So, it's funny because I was diagnosed in January. The kidney came out in March. The treatment started in April and ended in July. My kidney cancer treatment that saved my life lasted three months. I haven't had a drop of anything since.

Host: Wow. What an amazing story. And I know you're going to expound on this during your keynote coming up, which is going to be great. Dave, this has really been fantastic. Thank you for sharing your story with us and opening our eyes and hopefully a lot of our ears as we all start to listen better, as you prescribe to us. So, thank you so much for your time. And we're looking forward to the keynote on June 8th.

Dave: Any hospital that helps me or me saved myself or a beloved family member, man, you got my loyalty, right? That's priceless.

Host: Absolutely. So true, Dave, thank you again. We really appreciate this.

Dave: I appreciate the invitation and I'm glad to help. Thank you very much for your professionalism and tolerance of my frailties and, Bill, I really enjoyed working with you.

Host: Well, that is really nice of you to say. Thank you so much. The pleasure was actually all mine. Thank you again, Dave.

Wow. What a story, man. That is amazing. That is Dave deBronkart. Loved talking with him and he's going to be delivering the keynote at the 2021 Advanced Healthcare Social Media and Digital Marketing Virtual Conference, hosted by the Mayo Clinic Social Media Network and SHSMD coming up on June 8th through June 10th. Dave's keynote is going to be on June 8th.

And make sure you register today. It's $195 for the full conference pass, which includes full access to the virtual conference, access to virtual networking events. Free one year SHSMD membership for new members and early renewal for existing members, free one-year Mayo Clinic social media network premium membership. How cool is that? And on demand access throughout 2021. To get registered, go to shsmd.org/education/2021-Mayo-shsmd. And of course SHSMD is S-H-S-M-D when you type that in there. And if you found this podcast helpful, and as I always say, how could you not, please come on now, make sure you share this on all of your social channels and please hit the subscribe or follow button to get every episode of the SHSMD podcast. This has been a production of Dr. Podcasting. I'm Bill Klaproth. See ya.