Medical misinformation is a serious issue that is on the radar of policymakers, public health officials, pediatricians, and parents alike. It’s so prominent that in 2021, with the COVID-19 pandemic raging and an undercurrent of medical misinformation working against public health efforts at vaccination, the Office of U.S. Surgeon General Dr. Vivek Murthy issued an advisory on the deadly consequences of health misinformation and its equally concerning sibling, medical disinformation. Now Dr. Geeta Nayyar, a rheumatologist and former chief medical officer for AT&T and Salesforce, has penned a book about it, entitled “Dead Wrong: Diagnosing and Treating Healthcare’s Misinformation Illness.” tackling the age-old and increasingly more entrenched issue of medical misinformation and disinformation and its impacts on the health care system and patients.
Carol Vassar, producer
Guest: Geeta Nayyar, MD, MBA, rheumatologist, author and health care technology consultant
EPISODE 39 TRANSCRIPT
Carol Vassar, podcast host/producer:
Welcome to Well Beyond Medicine, the Nemours Children’s Health podcast. Each week we’ll explore anything and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar. Now that you are here, let’s go.
MUSIC:
Well Beyond Medicine
Dr. Geeta Nayyar, rheumatologist and author:
Look, this has been an age-old problem. Long before TikTok, long before artificial intelligence, mis- and disinformation has crept into our households and our brains and our minds.
Carol Vassar, podcast host/producer:
Dr. Geeta Nayyar is a rheumatologist, speaker, consultant, former chief medical officer for both AT&T and Salesforce and now bestselling author. Her book, Dead Wrong: Diagnosing and Treating Healthcare’s Misinformation Illness, tackles the age-old and increasingly more entrenched issue of medical misinformation and disinformation and its impacts on the healthcare system and patients like you and me.
Medical misinformation and disinformation are serious issues on the radar of policymakers, public health officials, pediatricians, and parents alike. So serious is the problem that in 2021, with the COVID-19 pandemic raging and an undercurrent of medical misinformation working against public health efforts at vaccination, the Office of U.S. Surgeon General Dr. Vivek Murthy issued an advisory on the dangers of health misinformation.
Dr. Vivek Murthy, U.S. Surgeon General:
Today, we live in a world where misinformation poses an imminent and insidious threat to our nation’s health. Health misinformation is false, inaccurate, or misleading information about health, according to the best evidence at the time. While it often appears innocuous on social media apps and retail sites or search engines, the truth is that misinformation takes away our freedom to make informed decisions about our health and the health of our loved ones. We must confront misinformation as a nation. Every one of us has the power and the responsibility to make a difference in this fight. Lives are depending on it.
Carol Vassar, podcast host/producer:
Advisories and reports from the Surgeon General are reserved for the most urgent of public health issues. The landmark 1964 Surgeon General’s Report on Smoking and Health, for example, set the stage for reforms that reduced tobacco use over subsequent generations. The Surgeon General’s office in 1986 issued a report on AIDS, which stated in plain but evidence-based language of the time what AIDS was, how it spread, and how it could be prevented.
If you lived through the earliest days of the AIDS epidemic, as I did, there was misinformation galore, and it was pervasive. By the time Dr. Nayyar was a physician in training in the early 2000s, the myths, rumors, and misinformation regarding AIDS were alive and well in the community of AIDS patients, as well as in the eyes and ears of the general public. We had the opportunity to speak with Dr. G, as she’s known, at HLTH 2023 in Las Vegas last month to learn more about how deadly medical misinformation and disinformation can be.
Dr. Geeta Nayyar, rheumatologist and author:
What was so inspiring for me to write this book was really living through COVID, which for me was really a flashback to the early 2000s when I was a doctor in training, an excited doctor in training, who saw AIDS patients … not HIV patients, saw AIDS patients … left and right. Every other patient I had died for a significant part of my training. It was very humbling as a physician in training to see that everything I had been taught was really limiting and that I couldn’t do anything. It was pretty futile because people were so misinformed about how HIV was spread.
The book really starts off with that journey. I talk about one of my first patients, Jerome, who just kept insisting and looking at me and said, “I can’t have AIDS. I’m not a homosexual. Doctor, you are wrong.” It was really from that era that I understood the power of myths and disinformation. People were convinced either from their church, from their politics, from their neighbors that the only way you could get HIV was if you were a homosexual, and if you weren’t, well, there was nothing to worry about.
As we know now and many moons later, it is, in fact, a sexually transmitted disease that equally affects all men and women. Whether you have male partners, female partners, it doesn’t matter, and so you want to protect yourself. We’ve now come a long way with that illness, that has now become a chronic disease. When I think about what we went through through COVID, it was very reminiscent of that time for me, but even worse as a respiratory illness that could really spread much faster and quicker.
Carol Vassar, podcast host/producer:
Talk about the repercussions of that time 40 years ago or 23 years ago when you were starting your training. The misinformation was still alive then and, in many ways, is still alive now with regard to HIV/AIDS. What lessons did we learn that perhaps we didn’t really employ during COVID-19?
Dr. Geeta Nayyar, rheumatologist and author:
Well, that’s really the kicker because here we are in a post-pandemic era where we did some dramatic innovation. You want to talk about technological innovation? We made a new vaccine, an mRNA vaccine, in nine months. Do you know the hardest part of that? Well, you do know this, Carol. The hardest part of getting people to take the vaccine was the way we communicated it. It wasn’t making the vaccine. We nailed that in nine months. We are in 2023, and many people are not taking advantage of that innovation today. Today, many people are not getting their COVID vaccine. Why is that?
When you ask what we’ve learned, I think we haven’t learned enough. Here we are sitting at HLTH, where we have learned, my gosh, the power of technology, artificial intelligence, social media, CRM, EHRs. We have to start making mis- and disinformation a priority because that is the undercurrent to consumer experience. That is the undercurrent to physician experience. That is the undercurrent which prevents people from getting mammograms, prevents people from making doctor’s appointments, prevents people from saving their own life.
That’s what we have to learn, is that public health, healthcare, half of the battle is communication. In the context of a physician shortage, the only way to scale that relationship and that message is through technology, technology used for good, not for evil.
Carol Vassar, podcast host/producer:
When we talk about technology, many people will think social media and online communication, and emails forwarded and forwarded and forwarded with misinformation. That’s very different than it was in 1980, ’85, 2000 even. Social media and other digital media, how much did that contribute to the misinformation with regard to COVID-19, particularly vaccines?
Dr. Geeta Nayyar, rheumatologist and author:
There’s no doubt that it did. Look, we’ve left this up to the social media companies that profit off of engagement, and guess what? Bad news travels faster than good news. The lesson learned is we can’t leave it to the social media companies. We can’t leave it to anyone. We have to leave it to healthcare. Healthcare has to lead. I talk about Cleveland Clinic in my book. Paul Matson headed up their entire marketing and communications plan, and he did it so well. He let the doctors be the doctors, and he gave them a microphone, and he made sure that they had a partnership with YouTube, and they went to town on social media.
Guess what? Not only did you get information, but you can make an appointment at a Cleveland Clinic doctor that you already knew before you walked in the door. He built brand loyalty. He built patient engagement. He used social media. He used analytics. He used all the tools that we’re talking about, but he prioritized mis- and disinformation in the context of driving the patient engagement strategy and brand loyalty strategy for the Cleveland Clinic.
In the absence of that, misfits come to town. In the absence of that, patients listen to their neighbor. They listen to Dr. John Doe selling a thousand-dollar supplement, right? That’s the opportunity we have in healthcare, is how do we own the narrative, not be the victim of the narrative, meeting our patients in the emergency room after they’ve drank chlorine?
Carol Vassar, podcast host/producer:
I want to pull on one thread that you mentioned, and that has to do with healthcare leading the way. We can’t really do it alone, though, can we? We really need the partnership of the social media companies and of the government to make sure that information is out there that is correct.
Dr. Geeta Nayyar, rheumatologist and author:
We need the partnerships, but actually, we have to start in our own house, right? Nemours is doing this really well. You need to have the chief marketing officer working with the chief medical officer, working with the chief information officer. You need to have the different spheres within your organization say, “Hey, what is our strategy here? How is mis- and disinformation something our hospital is owning and propagating the facts, so that patients trust us and come in and see us and we’re accountable for the information we’re putting out?”
It has to be a cross-siloed priority across the organization, and it has to start within the healthcare provider, within the pharma life sciences company, within the payer environment. Then, of course, if there’s a way to partner the way Paul Matson did with YouTube Health, with Meta, with WhatsApp, there are endless opportunities for partnerships. I think healthcare first has to lead, learn from organizations like the Cleveland Clinic, and then pay it forward outside of the organization with external partnerships.
Carol Vassar, podcast host/producer:
I’m a consumer. Tell me how I can tell if the information I’m consuming is good for me is going to benefit my health.
Dr. Geeta Nayyar, rheumatologist and author:
Well, that’s a great question, and we should start that question with your own personal physician. When patients ask me that, I’m a rheumatologist. I say, “Hey, listen, I do want you to read. I do want you to be smart. I do want you to come in with your questions, but here’s the thing. I want you to start with the Lupus Foundation. I want you to start with the American College of Rheumatology. I want you to go to these trusted resources that I trust and that I also know are specific to your disease, specific to patients like yourself. I want you to read, and I want you to go, and I want you to find chat rooms. I want you to find support groups, but within these trusted entities,” number one.
Number two, “Follow me. I’m your rheumatologist.” Be able to follow your own doctor. Provider organizations need to provide that, right? They need to find a place where their doctors can show their content. They don’t have to provide the content. The organization should do that, right? We’re not asking our doctors to be social media experts. We’re just asking them to be experts. Let the marketing team do what the marketing team does best.
Number three, “If you’re not sure of a piece of information, if it’s not coming from those sources, don’t pass it on. Don’t take it as gospel, right? Question it, and come in. Next time I see you, come in and ask me. `Hey, I read this thing, or I saw this thing,’ or, `My neighbor sent me this thing. Dr. G, is that right? Does that look right to you? Is that something I should do?'”
These are some really simple steps that every consumer should know, but the most important thing is actually having a relationship with a physician, so as information changes and evolves in medicine, just like it did during COVID, you can ask specific questions. Not just general questions, but for me, for you, Carol. “For what you know about me, do you recommend this, Doc?” That’s really the last mile of mis- and disinformation. Vitamin D is great for most women, not all women. There are exceptions. That’s where you really need that personalized care and that understanding that the human body is different for everyone. That’s why that relationship with your doctor is really important.
Carol Vassar, podcast host/producer:
You can do that through a lot of EHRs. You can ask those questions directly of your provider.
Dr. Geeta Nayyar, rheumatologist and author:
Absolutely. You could schedule a virtual visit, right? You guys are doing this well as well. Even if you don’t have time, look, half of medicine, if done right, is counseling and education. Setting up time just for counseling and education and to ask questions is absolutely welcome, and it’s much easier in today’s world of tech.
Carol Vassar, podcast host/producer:
Let’s talk about what information (and) disinformation does to a person’s health. How does it affect me, and how does it affect my community?
Dr. Geeta Nayyar, rheumatologist and author:
Well, it’s the title of the book, Carol. You can be dead wrong. We saw it firsthand with the COVID-19 pandemic. Everyone that refused to wear a mask, everyone that refused to get vaccinated, they hurt not only themselves but their families, their friends, and in irreparable ways. Children lost parents, parents lost children, and those scars can’t be removed, so it’s life-changing and life-altering in many ways. The stakes are high in medicine. The stakes are high in healthcare. That’s the difference. We can’t reverse these things.
Carol Vassar, podcast host/producer:
Let’s talk about AI in healthcare. I’m going to change the subject completely away from information/disinformation. AI in healthcare in general right now, what potential does it have? Why is it important to understand the downstream effects of AI?
Dr. Geeta Nayyar, rheumatologist and author:
AI is incredibly exciting. When I think about what AI could do to make prior authorization easier, what it could do to make clinical documentation easier, what it could do to help us with clinical decision support, it is fascinating and just truly awe-inspiring. What AI can’t do is replace the human factor. AI cannot replace the doctor. It cannot replace the nurse. If we lead with that, which I hear many organizations talking about, we have missed the mark.
Very similar to the EHR revolution, we need to understand the problems of today and ask ourselves, “What are the problems of today?” The problems of today are that doctors and nurses are overburdened. They are buried in paperwork. It is difficult to be an empathetic clinician when you are yourself burnt out and tired and feel that the technology that you’re being forced to use is not helpful. We can’t make the same mistake with AI. We need to focus on the areas where we can unburden our clinical staff, scale the doctor-patient relationship, and really bring the humanity back to medicine.
That is the most important thing for us to learn and to have the humility that we’re still learning about AI. We don’t have it all sorted, so going slowly, methodically, ethical uses in mind and an eye towards downstream effects. Maybe we solve one problem, but we create three new ones, just like we did with the EHR. We have to learn from the EHR revolution and not make those same mistakes this time around.
Carol Vassar, podcast host/producer:
When it comes to AI, what misinformation are we hearing about out there?
Dr. Geeta Nayyar, rheumatologist and author:
Well, look. I think the biggest thing on the clinical side is we hear about hallucinations. We hear about the fact that artificial intelligence might be incredibly smart and action up information that is actually clinically inaccurate. It’s difficult for the end user to know that, right? If you query a search or use AI, you trust it. Should AI action up a medication that’s wrong action up a treatment plan that’s wrong, again, you could be dead wrong. It’s very important that we’re mindful of that.
I give a lot of analogies to self-driving cars. I would not put my daughter in a self-driving car, not at this moment. Now, if it was an AI-enabled vehicle that also had a person in the passenger seat, that sounds pretty safe to me, right? The same goes for the clinical side. Using AI as a tool, but still with human oversight, I think is really where we’re at for now. I think all of this is going to evolve. We’re going to get smarter (and) faster, but it’s very early, and we have to keep an eye towards the downstream effects that we’re not even mindful of yet.
Carol Vassar, podcast host/producer:
When it comes to information, misinformation, disinformation, are certain communities affected more by that?
Dr. Geeta Nayyar, rheumatologist and author:
A hundred percent. I mean, we know that it’s the underserved communities. We know it’s the Black and Brown communities for a variety of reasons. One, they don’t have access to a physician. Number two, they don’t trust the healthcare establishment. You don’t have to look too far. We cover this in the book as well. Tuskegee, Henrietta Lacks. There are really good reasons why the Black and Brown communities do not trust the healthcare establishment, but you know what? They trust their neighbor. They trust a midwife. They trust a pharmacist. It’s great that there are allied health professionals that a lot of these communities rely on, but often it’s not enough. It’s not enough, and you can find yourself in a rabbit hole long before you’ve even realized it.
Carol Vassar, podcast host/producer:
What else can we do?
Dr. Geeta Nayyar, rheumatologist and author:
Well, I think, look, we have to remember this has become a politicized issue, and so, to the extent we’re mindful of that with presidential elections coming up. Science should be apolitical. It should not be a right or left issue. Science is science and lives are lives. To the extent we weigh into that and understand that when we cast our vote is critical. I also think it’s important that we weigh into policies, we weigh into policies that regulate the industry in a way that keeps us all safe. Because right now, we are really leaving it to the companies that profit off of misinformation. There is really no oversight at this time.
When you look at the different things, even in the medical establishment where people have lost their licenses for propagating mis- and disinformation, we need to start setting standards. I mean, the Surgeon General, for the very first time, labeled a misinformation warning during COVID-19. That has never happened in history. This is escalating, and we have to now open our eyes and our minds to the policy/regulatory side, to policing ourselves as professionals, as organizations, and bake this into how we operate, because everything we touch has a communication angle in tech.
Carol Vassar, podcast host/producer:
Is this problem surmountable? Can we overcome this?
Dr. Geeta Nayyar, rheumatologist and author:
Look, I’m forever an optimist. I absolutely think we can because I’ve seen the power of it. I mean, we’ve frankly seen the power of it, but I talk about the evil empire in the book. It could be for the good empire. Why not? We’ve just, like I said, been so focused on the science. We developed this world-class innovation, this mRNA vaccine. We can come this last mile. We can come the last mile of communicating and building trust. I absolutely think we can use the same technologies to amplify trust and humanity.
Carol Vassar, podcast host/producer:
How did you end up becoming a rheumatologist? How did you end up going into medicine?
Dr. Geetha Nayyar, rheumatologist and author:
I come from a family of physicians. Both Mom and Dad are immigrant docs from India. My mom actually has a very rare autoimmune disease that she was misdiagnosed with most of her life until I became a rheumatologist. A big part of why there was a disconnect in her diagnosis was her records and her information in different places, and the cardiologist not talking to the pulmonologist, not talking to the endocrinologist, et cetera.
That’s actually how I ended up in tech because I put it all together, but you could only put it all together if it was your mom and you’re a rheumatologist yourself, which obviously can’t be every patient family’s situation. That actually is what inspired me to go into tech and say, “Hey, tech could scale this. Tech could solve so many of the problems we have in day-to-day medicine.” That’s been a big part of my inspiration as I go forward.
Carol Vassar, podcast host/producer:
It’s been eye-opening for me here at HLTH to see that relationship between tech, mainly in private industry, and healthcare mainly in the public, not-for-profit world. Talk about that relationship and how important it is moving forward.
Dr. Geeta Nayyar, rheumatologist and author:
Look, I think partnerships are the key. You talked about it earlier. None of us can do this alone. I do think COVID showed us that, right? We saw private enterprises, nonprofits, working with the government. No one enterprise can do this alone. So much of our incentives are tied together, and so many of us really want to see healthcare change and see the patient put at the middle because this is personal. Every one of us.
I always say to our product teams wherever I’ve worked that we’re not building garage door openers here, right? We’re building products that touch people’s lives or change their lives, or change their health. We take it seriously, we take it with humility, and the rising tide raises all boats. I think that that is absolutely something that is critical and important.
Carol Vassar, podcast host/producer:
Are we on the road to personalized medicine through tech?
Dr. Geeta Nayyar, rheumatologist and author:
I think we’re getting there. Again, I don’t think the problem is tech. We have so much technology. We have so many tools. It’s how we use the tools, right? It’s what are we building. Are we all building a dinosaur? Are we building a birdhouse? Are we building a slide? I’m an 11-year-old, you can tell. We like Legos, but it’s aligning on what is it that we’re building and what are the problems we’re solving, and which ones are we going to do first, second, third, and how are we going to pivot and be agile as things change.
Technology is not the problem. It’s the people part. It’s how we implement it, how we use it, and how we’re mindful of how it touches and affects people that’s really the key to its success or its failure.
Carol Vassar, podcast host/producer:
What (kind of) healthcare system do you want to leave for your daughter?
Dr. Geeta Nayyar, rheumatologist and author:
Oh, my goodness. I hope that she is in a healthcare system that is affordable, accessible, transparent, and really available to everyone. I hope she feels just as inspired by science and medicine and the possibility of understanding what the human body and humanity’s capable of. That’s really my dream for her.
Carol Vassar, podcast host/producer:
Anything I haven’t asked you? No pressure.
Dr. Geeta Nayyar, rheumatologist and author:
No pressure. No, no pressure.
Carol Vassar, podcast host/producer:
Anything I haven’t asked you that you’d like to share? This has been enlightening. I love it.
Dr. Geeta Nayyar, rheumatologist and author:
What I would like to share is that I think so many of us think of mis- and disinformation as not a priority. There’s no hospital system out there right now that I know of that has mis- and disinformation as a strategy, as a strategic priority. We do have health systems, life science companies and payers out there that have value-based care as a priority, that have patient engagement as a priority, that have decreasing administrative burden as a priority.
What I would say is mis- and disinformation, it’s the undercurrent behind all of them. Actually, it is a priority, but you have to call it out. It’s this invisible smoke in the room that no one is really calling out. It is the elephant in the room that is underlying all of these things. Because if you communicate well, you’re leading prevention, you’re leading people to get mammograms, you’re leading people to get their annual visits, you’re leading people to get colonoscopies, not colon cancer.
How do you do that and also ensure that marketing and clinical are joined? Too often in healthcare, we think of marketing as cute, a nice-to-have, the place where you advertise on Sixth and Seventh. We have virtual visits and 24×7 pharmacy support. We don’t think of marketing as a clinical asset. We don’t think of marketing as patient education. We only did that during COVID.
In many ways, I wish we could keep the same mindset that we had during COVID, which is how do we work together. How do we solve this? This is a crisis. Every day in healthcare is a crisis. If you need a reminder of that, just go down to your emergency room.
Carol Vassar, podcast host/producer:
Thank you so much, Dr. G, for being here.
Dr. Geeta Nayyar, rheumatologist and author:
Thanks, Carol. Thanks for having me.
Carol Vassar, podcast host/producer:
Dr. Geetha Nayyar is a rheumatologist and author. Her book is called Dead Wrong: Diagnosing and Treating Healthcare’s Misinformation Illness.
We’ll continue the conversation on the impacts of information and misinformation on medical decision-making next week when we talk with Dr. Garth Graham. Dr. Graham is Director and Global Head of Health and Public Health Partnerships at YouTube. Here’s a preview.
Dr. Garth Graham, Director, Global Health, YouTube:
Truth is, people consume information that they’re not reading. It may be video, it may be even conversational. The concept of understanding health information goes beyond health literacy at a reading level and genuine health literacy in terms of all the different factors that drive information or change of health information. All of this is why information has always been and continues to be a important component in health outcomes.
Carol Vassar, podcast host/producer:
Dr. Garth Graham, next time on the Nemours Children’s Health Well Beyond Medicine podcast. Give us your take on medical misinformation and how it can be prevented. Leave us a voicemail at nemourswellbeyond.org. You may hear your ideas shared on an upcoming podcast episode. Wellbeyondmedicine.org is also where you’ll find all of our podcast episodes. When you visit, please be sure to leave a review and subscribe to the podcast as well.
Thanks to our production team for this episode: Cheryl Munn, Che Parker, Susan Masucci, and our onsite engineer, Adonis Vera from Clarity Productions. I’m Carol Vassar. Until next time, remember, we can change children’s health for good, well beyond medicine.
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