How AI Is Putting Patients Back in Control of Their Healthcare | Robin Farmanfarmaian

Welcome to the Legacy All-Stars Podcast. We feature inspirational stories from people who dedicate themselves to helping others. Here is your host, Alan Pavlosky.

Welcome back, everybody. This is Legacy All-Stars Podcast. I'm your host, Alan Pavlosky. Today I have the genuine privilege of sitting down with someone whose story is as powerful as the mission she's built around her career. Robin Farman-Farmian is a Silicon Valley-based entrepreneur, author, and one of the most sought-after voices on the future of healthcare and artificial intelligence. She has delivered over 250 keynotes in 16 countries, speaking for organizations like UnitedHealthcare, Kaiser Permanente, Roche, Abbott, and even the White House. But what makes Robin different from most experts in her field isn't just her expertise, it's the deeply personal journey that fuels it. At age 16, Robin was misdiagnosed and began a decade-long ordeal of surgeries, hospitalizations, chronic pain that few people could imagine enduring. She ultimately took full control of her own healthcare, firing her entire medical team, rebuilding a new one, finding the right diagnosis, and going into remission almost overnight. That experience didn't just change her life, it launched her mission. Since then, Robin has co-founded multiple startups, including Organ Preservation Alliance, which works to advance technologies that expand the supply of transplantable organs. Directly saving lives. And that's what we're all about here at Legacy All-Stars. She has written 3 books, including The Patient as CEO, which makes the case that technology can and must put the patient at the center of their own care. Her most recent work dives deep into how AI is on the verge of democratizing healthcare on a global scale, shifting care from hospitals and clinics into the hands of individuals wherever they are. Robin mentors women in entrepreneurship, technology, and healthcare. She has served on advisory boards ranging from AARP to Singularity University to South by Southwest. At every step, her purpose has been clear: use innovation not just to build companies, but to improve and save lives at scale. I am certain this episode will change all of us to think differently about our health, our potential, and what's possible when technology and human determination come together. Robin, welcome to Legacy All-Stars. I am super excited to have you.

I've been looking forward to talking with you for like 2 weeks now.

I love it. I can't wait. Let's jump right in. Your story is one of the most compelling I've come across. What particularly resonates with me is how you have turned adversity into triumph. Take us back to that turning point, the moment you decided to take control of your own healthcare and stop accepting diagnoses that were really weren't serving you.

Yeah, so I was misdiagnosed when I was 16. The misdiagnosis was ulcerative colitis. That is curable if you take out someone's entire large intestine. And so by the time I was 19, my doctors are like, get your large intestine taken out now, you're not going to live to 30 if you don't, you're going to have colon cancer, like you are way too sick, you just need to get rid of the organ. And so freshman year of college, I got rid of it. And I, in what's called the total colectomy with J pouch, and it was a series of 5 major major surgeries, two of them being emergency surgery. And so at that point, my doctors are like, oh, you're cured because we took out the colon. Well, I didn't have ulcerative colitis. For 7 years, I went almost completely untreated with the exception of pain medication. And so I was in such excruciating pain every time I ate that my doctors ended up switching me over to 80 milligrams a day of methadone. That is a gigantic dose of drugs. And let me tell you, I'm like 5 feet tall, 95 pounds. That, you can imagine, it would take down a football player. And I absolutely hated that drug. It is a horrible drug because it has a lot of rebound pain. As soon as it wears off, you're actually in more pain. And so I went back to my doctor and they said, okay, well, you know, we could think about putting a morphine pump into your spine. It's a surgical procedure and just be on morphine for the rest of my life. And I was like, uh, no. So I went home that night. I decided to take full control of my own healthcare and become the CEO of the healthcare team. I rebuilt my healthcare professional team with doctors and nurses that worked with me as a team and a colleague. I ended up getting diagnosed correctly with Crohn's disease, put on an IV medication called Remicade. Within 24 hours of that very first IV dose, I went into full remission. It quite literally happened overnight.

Wow. You know, it strikes me, after all you've endured, the misdiagnosis, the surgeries, the hospitalizations, how did that experience shape the person and the advocate you became?

Yeah. You know, I think I am a lot more understanding and a lot more empathetic to what people are going through, not just in their healthcare, but in general with their emotional status, with their families. I just feel like I have a lot more empathy. And I have a lot more range of experiences because of it, right?

Most definitely. You went from being a patient who felt powerless to someone who co-founded multiple companies and wrote the book on patient empowerment, literally.

Yep.

What drove that transformation?

So when I went into remission, I was like, all right, I need to pay it back because I know I went to the top hospital systems. You know, I was living in Massachusetts for a time period. I'm in California. I literally went to 4 of the top 10 best hospitals in the country, or even potentially even in the world, and all of them misdiagnosed me. It wasn't one doctor that was sleepy that day. It wasn't, you know, one physician who wasn't very good at their job. It was all of them. And so I realized I'm alive today because of all of those teams. And, you know, that there was a time where they didn't think I was going to live past 30. And so I feel like I need to pay it back by paying it forward. Because I know they deserve a lot of gratitude, but it's not like I even remember their names or anything like that, going through emergency rooms and operating rooms. So if I can help at least 100 million patients out there, I feel like I've paid back all of the goodwill that the healthcare industry gave to me.

Wow, that's an amazing and ambitious goal. I love that.

Yeah.

Let's talk about your book. The Patient as CEO makes a bold argument. That technology is fundamentally shifting who controls healthcare decisions. Where are we in that shift today, and where do you see it going?

Oh, we're pretty far into the shift, even if people aren't calling themselves the CEO of their healthcare team. When I first got sick— see, my mom was a pediatrician, so I even had a doctor in the family. My only access to medical knowledge was looking in her physician desk reference, the PDR, which is like this thick. And I had like no other information in healthcare. And so now we have so many resources. We can learn about these diseases outside of the doctor's clinic. That in and of itself is a massive shift. And because of that, people are taking more control. Maybe they're not the CEO quite yet of their team, but they're going in knowledgeable. They're asking ChatGPT things. They're Googling things. They're going to support groups on Facebook or Instagram. And they're able to come into their clinic visit visit with a lot more information than patients did in the '80s, '90s, and even the early 2000s.

Yeah, this is totally off the subject, but do you think that some of the doctors that might not be as committed to healthcare, really the best healthcare for their patients, might get a little intimidated by that knowledge that comes into them?

So yes, it's going to completely depend on the individual and also the country. And so I've given keynotes in both Germany and Japan, and those two countries are very paternalistic in their healthcare. And so Medscape Germany did a big article and feature on me one year, and at the very bottom in the comment section, there were doctors writing, "As soon as patients take control, I'm leaving medicine." Dude, come on. And so I think it's both generational, cultural, right? And not just cultural between, say, here and Germany, but within the United States. Right? People in different states are going to have different levels of wanting to be in on the patient being like a key member.

Yeah, for sure. A lot of people feel overwhelmed or intimidated when it comes to navigating their own healthcare. What's the most important mind shift you'd encourage someone to make right now?

The biggest mind shift is it's not you, it is the healthcare system. It was not built with the patient at the center. Right? And so, yes, it's difficult to navigate, but you are not the problem. And so within that, the best resources sometimes are other patients who are going through similar things than you have.

Yeah. You talk about patients becoming the CEO of their healthcare team. What does that look like in practice, especially for someone managing a chronic condition or a complex diagnosis?

Yes. So I say, you know, just like the CEO of a corporation, they aren't knowledgeable necessarily about finance, legal, marketing, right? Operations. They hire the best experts, they do their jobs, and then report back to you as the CEO. But the CEO's ultimate responsibility is to not just listen to all of the experts they've already hired, but to make sure the plan gets executed. And so being the CEO of your own healthcare team is no different. You do not need to understand healthcare. You don't need to understand medicine. You don't need to understand drug classes necessarily or different things that people might learn in medical school. You have to be an expert on yourself and how you want to live your life.

Yeah, makes total sense. Let's shift gears a little bit. AI is transforming so many industries, but healthcare feels particularly high stakes. Yep. Where do you see the greatest opportunity for AI to do genuine good in the healthcare field right now?

Oh, it's so exciting. Predictive analytics. And so if you think about it, there's a huge amount of data that's locked up in electronic medical records. Now, EMRs, or they're also called EHRs in the hospital, the software that they use for client billing and essentially as their CRM. But it's been locked up all these years. And there's been reasons for it. You've got HIPAA compliance. You've got privacy and data breaches and all of that. But it was only in the past couple of years that now healthcare organizations like hospitals and clinics are required to be interoperable, which means all of a sudden we're going to have a lot of clinical-grade data at our fingertips. Looking at the largest of the EHRs, it's called Epic, and, uh, they're in about 42% of hospitals. Well, they came out with a number of initiatives, including one where they will take all of the data back to when you were born up until now, and they will do predictive analytics on you. Hey, this patient looks like they're going to have metabolic syndrome and then potentially full-fledged diabetes over the next 5 to 7 years, meaning that the patient can take care of it right then and there long before they ever even need to think about going on insulin.

Makes sense.

Yeah.

You know, there's a real concern that technology can widen health disparities rather than close them. How do you ensure that AI in healthcare truly democratizes access rather than concentrating in the hands of the privileged only.

Yes. And so I want to make sure that we're using the word democratize correctly, meaning it is now available to a large number of people. It's not equitable, right? Equity is a whole different thing. Someone in San Francisco or Boston is going to get significantly better care than, say, someone in a very rural county in, say, Tennessee. Right? These have access to different doctors. They probably are paid more at their job because of where they live, that type of thing. So it democratizes, but it does not make things equitable. Now, the reason AI can do that is because we are changing from episodic, meaning when you don't feel good, that's when you call the doctor and you make an appointment and you go to the clinic, right? Into continuous. Episodic, continuous. Meaning you can do remote patient monitoring 24/7. You can do not just like your EKG monitor or your blood pressure monitor, your pulse oximeter, which measures the amount of oxygen in your blood. But there are entirely new categories of vital signs, including things like vocal biomarkers, using the patient's voice as an actual vital sign. Lowest hanging fruit in that particular world is the ability to count and categorize how many times someone coughs on a daily basis. This is a big deal because with things like COPD, you can now detect a COPD exacerbation 3 days before a patient would normally be hospitalized, just by counting how often they're coughing and what time of day that they are coughing. But these vocal biomarkers go way beyond just being able to count. Some are for neurology. Some will be able to detect things like, you know, mild cognitive impairment or even full-fledged dementia. It's all that are based on things like your speed of your speech, the word choice. Are you using nouns or using the words this, that, and the other thing? And so that's just one of the many new classes of remote monitoring that we can do now continuously to predict and catch things long before a patient needs to be hospitalized.

Yeah, to expand on that a little bit, you've spoken about ambient healthcare computing, the idea that care will be continuous and ever-present.

Yep.

Help our audience understand what that looks like and why it matters. I mean, you talked about it just now, but is there any more granular detail give us an example of some of the other ways that that will be useful to doctors and to patients?

Yes, absolutely. So I talked to a lot of organizations that deal with senior care, right, and aging in place. And this is a big deal. If you're not doing it yourself, you might have grandparents or parents that are now aging in place. Well, you can do things like put a radar on the wall. No one ever needs to change a battery. No one ever needs to hook it up to anything. It just gets installed on the wall. And through that radar, we can detect things like fall detection, heart rate, and respiratory rate from 8 feet away. Dude. And so now there's no video, there's no audio. So Grandma feels secure. There's like none of that kind of like worrisome of Big Brother constantly knowing exactly what she's doing. But Big Brother does know what her heart rate, her respiratory rate, and if she has fallen. Got it. Yep.

Let's shift gears again because I really want to talk about the Organ Preservation Alliance, which works to expand availability of transplantable organs. Tell us about the work that you've done with that and the lives that it's touching.

Yeah, so back in 2012, I co-founded it with a number of other physicians and, and other entrepreneurs that were interested in this space. We realized that cryopreservation of vascularized organs— heart, lungs, kidneys, liver— did not exist. We have cryopreservation for things like eggs and sperm, but still these molecules are toxic. And while it might not hurt like the embryo or the sperm, It would definitely hurt a heart if you had to use it in the amount you would need to keep a heart stable. Now, when you're dealing with organ transplants, a heart only lives outside the body for 4 to 6 hours, which means if you need a heart transplant, you need to be within that time window of a heart suddenly becoming available. That makes things difficult. So the waitlists are, you know, hundreds of thousands of people not even on the waitlist yet because they would never have a chance at getting something like a heart. And so what we did is cryopreservation for those big organs. We thought it was about 35 years out. That's how long it would take for that technology to develop. And so we decided to catalyze that. We scraped a whole bunch of white papers, found all the cryobiologists in the world. We held the first conference for cryobiologists that had been held for something like 30 years. And we did workshops with them. We came up with a 6-stage engineering process into creating a molecule that could cryopreserve a heart. Then we went to the White House, the DOD, and DARPA. DARPA is the Defense Department's, you know, like, that's the one that came up with the internet and the robotic arm and the smartphone. All of that came out of DARPA. And so they really want an organ bank for veterans. Right, or for their injured soldiers. So if someone gets injured, they want to be able to have a heart right then and there that they can rewarm and then transplant into the soldier. And so we worked with them and wrote a number of grants around the 6 stages of engineering that we came up with, with the cryobiologists. And that led to tens of millions of dollars going out to those scientists. Then we took it to the White House and we had all the letters in the room, right? The FDA, the HHS, the OSD, STP and really taught them where this industry was and got together with a couple of other nonprofits working on tissue engineering. Because that's the other thing, was we knew we needed to be able to cryopreserve a heart alongside the technology of tissue engineering, or what's called sometimes 3D printing of an organ. And so we're like, you know, if you've got a heart out there that you've 3D printed, it needs to be able to be cryopreserved. And so the White House set out like a big initiative, I think it was in 2015 or something like that, and we were a part of that. So we were part of the hundreds of millions of dollars that we educated them on what areas that should go into for things like organ transplants.

Wow, amazing. You've dedicated significant time to mentoring women in technology, entrepreneurship, healthcare. Why is that mentorship so important to you personally?

Uh, well, Well, so one of the reasons— let me back up. There are 3 major reasons that I decided to become a professional speaker and an author. First and foremost, I have something to say, right? I wanted to get it out there. The patient as the CEO— I could impact people's lives. Secondly, regardless of what platform you're building, that's going to help you with your career. So, you know, at the time I was doing things like business development and building companies, and so I thought, you know, it would just get me in front of the right people grateful. But the third reason I did it is because as a tiny woman in Silicon Valley, I was being pushed down like crazy. And like, men would steal my work and claim that they're the ones who spent like 3 weeks nonstop doing it. There was one case where all of the employees were on the website except for me, and I was like a vice president at the time. And so I'd be like to the CEO, like, Why is my name not there? And he's like, I have no idea. So they put it up. And then one of the men that worked under him would take it down again. And I'm like, oh my God. And I realized you cannot fight that through HR. HR is not gonna help women being sexually abused or emotionally abused in the workplace. Like I was, they're there to protect the company. And so I went home one weekend and I created a 5-year project plan for myself in how to be an author and a professional speaker that I can charge for up to $20,000 for a keynote. And let me tell you, it worked better than my wildest dreams. So I took that 5-year project plan, I started executing on it. And when my first book published in 2015, it was like flipping a light switch on the men in the workplace. Suddenly I was in an army tank and the men were on horseback. So when the MeToo movement happened a couple of years after that, I was like, oh my God, this is happening to other women. We didn't know this about, you know, like none of us ever thought, oh, it happens at a big scale. We just always assumed that we were the only one. And so I took that project plan and I turned it into a book system and a workbook called The Thought Leader Formula. And I give it away for free. Like go ahead and email me or find me on LinkedIn. I will send you the PDF. This will empower you to take control of your own career and combat things like racism or sexism or ageism in the workplace.

I love it. That's wonderful work. Yeah. Well, with over 250 keynotes in 16 countries, you've had the chance to see healthcare challenges on a global scale.

Yes.

What's the most important lesson you've taken from that experience?

Places like the Nordics have healthcare— they're doing healthcare better than anyone else. They're on more of a value-based healthcare type of thing. A lot of the time, we do pay per visit. And so say you needed knee surgery, well, it would be, okay, this Band-Aid cost whatever, $40. Like, this IV cost this, the operating room, here are the costs for the doctors, and everything is a line item. Well, with value-based healthcare, you're getting like a knee replacement, it's agreed on before the patient actually goes into the OR. And so they say, okay, well, this is gonna be paid for $5,000. If the patient does badly and needs to be rehospitalized or have another surgery, that's on you, right? And so it's not reimbursed past that. But then it's also, you get to make more money that way as well because if you don't even have to spend up to the $5,000 and you can get that patient on their legs and, you know, walking and have a great outcome, you will actually make more money beyond that $5,000 with bonuses and things like that. And so the Nordics have got it pretty far down the line of value-based healthcare and they're some of the happiest countries in the world and some of the best healthcare in the world. And so looking at the US healthcare system, it's a little bit scary because it's a $5.3 trillion industry. If you look at global economies, US is the number one economy, China is the number two economy, and Germany is the number three economy. If you take out the US healthcare system, it is actually bigger than the GDP of Germany. So it is the third largest economic system in the entire world. Now, within that, 28% of all revenue goes to 6 companies. Yeah. And most people have no idea. And it's all the big payers, right? So one of the giant payers, they have over 2,700 subsidiaries and they had $154 billion with a B in 2024 of intercompany eliminations. That's a very fancy accounting term to mean that they don't want to tax income twice. They have that many subsidiaries that they take in money, and then they have to pay their own subsidiaries things like, uh, provider networks, whether it's doctors or nurses, the pharmacy benefit managers, and the pharmacists, and dispensing of the drugs. So all of that money just moves within the large payers, and so they don't have to pay taxes on it. And it shows you just how much of the healthcare system that they control.

Well, that's not surprising, but kind of crazy.

Kind of crazy, yes.

You know, I want to move into legacy because what you're doing is making so much impact. And when you think about legacy, what do you want to be remembered for? And what do you want your work to ultimately represent?

I want to be remembered for helping to empower patients, women, minorities, and even all of you tall, gorgeous, you know, 6-foot-tall white males. But, you know, like, I want to make sure that I can make a difference in people's daily lives, right?

Yeah, makes total sense. Well, for someone listening today who's navigating a health challenge, feeling powerless in the system, or simply wanting to do more with their health, what's the most important thing they should know?

Knowledge, right? Get knowledgeable about their particular condition. And you always have to remember that ChatGPT and all of those other generative AI can be wrong. They hallucinate all the time. So one way around that is to check with something like ChatGPT and then paste it into Gemini and then go to Claude and ask it a whole different question and then put all of those together. And put it through like a fourth large language model and say, okay, what should be my plan? What patient groups should I be a part of on Facebook? Or what doctor should I be seeing? How long is the wait time? Like you can get an actual full project plan out of large language models right now for things like that. And so I'd say, yeah, go and do it. Just remember, verify, verify, verify.

Yeah, good, good, good advice. Where can our audience find you, follow your work, and tap into everything you're building?

Sure. So I am the only Robin Furman-Fermion in the universe.

I would bet that's accurate.

Yeah, it's, uh, very, very easy to find me. I'm on all of the social media, but LinkedIn and my website are the easiest ways to probably get me on, and I'll probably respond the same day.

Yeah, and we'll be sharing a lot of those things on the show notes, so people will be able to use that as well. But I like to have an audible reminder of what that is. Robin, thank you so much for being on the show. What you've shared is a reminder of something that sits at the heart of Legacy All-Stars, that the most powerful legacies are built not just through achievement, but through service. You turned one of the most difficult chapters a person can face into a lifelong commitment to making sure others don't have to suffer the same way. The startups you founded, the patients you've championed, the stages you've stood on around the world, All of it points to the same North Star, a world where every person has the power and the tools to take charge of their own health and their own life. To our audience, I encourage you to pick up Robin's books. We'll have the notes in the show notes. Follow her at robinff.com. If you're a leader, an entrepreneur, or a healthcare professional, pay attention to the work she's doing with AI. It will matter to you, to your organization, and to the people you serve. Robin, thank you again for being here. Just want to give you one last chance to say one last goodbye to our listeners. Thank you so much again.

Thank you, everyone. And if you want to read The Thought Leader Formula or my last book, How AI Can Democratize Healthcare, go ahead and just email me. I'll send you the PDF. You don't have to buy it on Amazon.

Love it.

Yeah.

Well, that's the end of the episode. I'm Alan Pavlosky. This has been another version of Legacy All-Stars podcast, where we spotlight people using their success to leave the world better than they found it. We'll see you next time.