As a nurse with MS, I’m interviewed about AI’s real role in care: pattern recognition, human-in-the-loop skepticism, and the Three T’s and Two C’s framework. Click here to view the printable newsletter. More readable than a transcript. Click here for a verbatim transcript Summary I sit in the guest chair on Practical AI in Healthcare with Steve Labkoff. I walk through my experience feeding my own symptom logs, lab results, and ten years of clinician notes into an AI LLM: a physical therapy referral I needed and hadn’t scheduled, a medication side effect my neurologist later confirmed, and a rating scale buried in my chart that no one had surfaced. I describe the less impressive side: the four-pound box of unsorted paper my primary care practice mailed me and the 296 pages of unsearchable PDFs I got back from another system in fifteen minutes. Along the way, I lay out my framework for judging any digital health tool, the Three T’s and Two C’s: time, trust, talk, control, and connection, and explain why I insist on keeping humans in the loop even though the research on that is more complicated than people assume. This isn’t a pitch for AI in healthcare. It’s a working nurse and patient’s honest field report. What’s your experience been feeding your own health data into an AI LLM? Tell us in the comments. Episode Transcript Proem I usually ask the questions. This time I’m the guest. I met Drs. Steve Labkoff and Leon Rozenblit a couple of years ago at a DCI Network conference. They host Practical AI in Healthcare, a show I’ve listened to steadily, though it creates more tension for me than any other podcast I keep coming back to. Usually, I jettison podcasts that do that. I stay with this one because I approach AI in healthcare the way I approach best health; I’m an N of one and resist generalizing, while most guests do a fair amount of it. I bristle at most of them, wanting the shades of gray that reflect deep understanding. In four of 33 episodes, the guest has had lived experience: ePatient Dave DeBronkart, Amy Price, Hugo Campos, and me. I invited Steve and Leon to join my virtual Reckoning group, which I’ve hosted since 2019. We give podcasters warm critiques of selected episodes: the kind of feedback you give when you’ve made a hundred mistakes yourself, can spot them quickly in someone else’s cut, and have endless thoughts about production, audience, dissemination, and life. They took the critique well. When Steve later asked me to come on his show to talk about how I use AI, not the theory but the daily grind, I readily agreed. They let me publish it here unchanged, apart from this Proem and Reflection. I struggled to prepare for this conversation. I wanted to wear all my hats, but had to narrow my focus to two. I chose my lived experience and nurse hats. Underneath it all was the question I keep circling back to. Not a cure. Best health, the most function, and Hello, and welcome to this week’s edition of Practical AI in Healthcare. My name is Dr. Steven Lapcoff, and this week I’m actually on my own because my partner, Dr. Leon Rosenblatt, is actually on spring break with his kids, so I am covering for him and he’ll be back in the next week. This week we have a guest who we met at a conference in Boston a few months ago at the Beth Israel at the DCI network. Steven Labkoff: We have Danny van Leeuwen. Danny is a nurse. He has background in giving actual physical care to patients. He actually runs his own podcast called Health Hats, the Podcast, and he’s been using AI in both his personal life and in his professional life very extensively. Also, Danny has a significant medical condition, and I’ll let him explain that in the course of the discussion because it’s with that lens that we got introduced at our patient-centric AI conference, and that’s why we thought it’d be a good idea to have Danny come and have a chat with us. So welcome to the podcast, Danny. How are you today? Health Hats: I’m good. Thank you. Thanks for having me. I appreciate it. Steven Labkoff: So Danny, as you probably have heard because you’ve helped us with our podcast, and for that I want to say thank you. For those who are listening in, Danny runs actually a group that actually helps folks running podcasts improve their podcasts, and he’s had Leon and I on many times to listen to critiques and feedback, and it’s been very, very helpful. Danny, we often start our podcast with asking for folks’ origin stories, like how did they get their cape and their superhero tights. What did you do to get you to this point in your life? And just tell us the background of what brought you here. Health Hats: Oh, thanks. So I’m a child of Holocaust survivors, and my parents– when I was young, my parents were active in the civil rights and fair housing movement in the ’60s. And when I was 16 and I was thinking about the war in Vietnam and worried about getting drafted, I wanted to learn what I could learn about the draft and how I could protect myself and manage. And I went to a church in downtown Detroit, and I went for a session of draft counseling as, you know, a little precocious at 16, and I found it fascinating, and they found me fascinating, and they encouraged me to become a draft counselor. And so I, uh, I actually took their course and became a draft counselor, and what I learned is that you change systems from the inside, not the outside. And I learned how the sausage was made, and that, uh, really pointed me in a direction. The way I got into nursing is really because I didn’t want to cut my hair I had an opportunity for a job at one point, and I could have read water meters or become an aide at the Detroit Psychiatric Institute. And reading water meters paid more, but I didn’t wanna cut my hair, so I got the job as, as nurse’s aide. And while I was there, they introduced me to the idea of going to nursing school, which was amazing. Steven Labkoff: It was more– You got paid more to read meters, water meters, than you did- Health Hats: Yes. Steven Labkoff: That’s unbelievable. Life gives you some real interesting turns and twists, doesn’t it? Health Hats: It does. And I was really fortunate because my first jobs in nursing were in physical rehabilitation and home care. I just happened to be in a place where the Holyoke Visiting Nurses was dying to hire a guy, and I was a brand-new nurse, and they ended up hiring me. And so my first introduction to nursing was not in acute care. It was in home care, and actually, I was the first male public health nurse in Western Massachusetts in 1976. And really, what I learned there was that most healthcare does not occur in the medical system. It occurs outside the medical system. And so when I ended up getting into medical care, it was always so interesting to me that everybody there thought this is where, you know, health happened, which it doesn’t. So over the 20 years of working as a nurse, I’ve worked in, other than the rehab and home care, I’ve worked in the emergency department, I’ve worked in ICU, I worked in pediatrics, behavioral health. And after about 15, 20 years, I shifted from becoming a student of individual health to a student o- of organizational health. And what I mean by that is I got into performance improvement. I led a couple of electronic health record implementations. I had a couple of gigs in the C-suite. I did some consulting. Now, in 2009, I was diagnosed with multiple sclerosis, and when I was diagnosed, I learned that I had had it for 25 years. And since my father died young, he died at 45 when I was 19 of his second heart attack, and so every time I would have some kind of episode, I would get a cardiac workup. And by the time the cardiac workup was done, you know, the episode was over, and this went on two, three, four times a year for a long time. And there was a pattern there, and nobody was connecting the dots for 25 years. That’s very important to me because the pattern of what was going on was in my records for 25 years, but nobody had synthesized it. Steven Labkoff: Yeah, they may have been biased, right? Because of your family history and having these episodes, you know, as a clinician, you get very biased by family history, and that can actually lead you down roads which may not be correct, and it sounds like that’s precisely what happened with you. Health Hats: So I’ve– I wanna bring in the caregiver role because I have been a caregiver for my grandmother, my mother, and a son in their end-of-life journeys. So I’ve been on many sides of very difficult decisions. As you said, that my shtick is health hats, and I’m health hats because I’m a patient, I’m a caregiver, I’m a nurse, I’m an advocate, I’m an informaticist, I’m a podcast host. I wear a lot of hats. And wearing many hats has gotten me a seat at many tables because they can check off boxes. When it was really different to be bringing patients o-on board, I was an easy choice. Uh, I was at the table for technical expert panels at CMS, at National Academy of Medicine, at AHRQ, National Quality Forum, PCORI, Patient-Centered Outcomes Research Institute. But really, I wasn’t really there in it for the seat itself. My goal was always to open seats for people who weren’t there yet Now let’s build the bridge, since this is a podcast about AI, let’s build that little bit of that bridge. So my first, like, serious experience with– Well, I don’t know about my first. I was involved in something that you probably are familiar with, which was the Blue Button Plus program, and my goal in that, I was there both as a patient and as somebody who was working with people with disabilities. I, I was VP of quality for an organization that supported about 40,000 people with disabilities. And my goal for that couple of years of weekly or every other week, I can’t remember
