Health Hats, the Podcast

Danny van Leeuwen, Health Hats
  • 5.0 (20)
  • Medicine

Learning with people on the journey toward best health.

  1. May 11

    Nurses’ Week, Handel’s Messiah, Oldest Maternity Hospital!

    From a 10-bed lying-in hospital to Handel’s Messiah, the Rotunda Maternity Hospital has operated continuously for 281 years. A Nurses’ Week story. Summary Across the street from Danny’s Dublin hotel stood a large white institutional building with no signage. It turned out to be the Rotunda Hospital — the oldest continuously operating maternity hospital in the world, delivering babies in the same building since December 8th, 1757. Surgeon Bartholomew Mosse founded it after losing his wife and child in childbirth, trained as a midwife in Paris at a time when physicians were penalized for practicing midwifery, and returned to Dublin determined to build something that didn’t yet exist. The first version had 10 beds and delivered 190 babies in its first year, with one maternal death. Unable to raise money for a larger hospital — no one wanted to fund poor women’s care — Mosse attended the world premiere of Handel’s Messiah in Dublin in 1742 and was inspired. He turned the future hospital site into a pleasure garden with orchestras, dances, and theater to attract wealthy donors. He was later imprisoned for debt, escaped through a castle window in Wales, hid in the mountains for three weeks, and died exhausted and broke in 1759, less than two years after the new hospital opened. Sara E. Hampson, one of Florence Nightingale’s original nurses, became the hospital’s first female superintendent in 1891 — a thread that ties Nurses Week directly to this building, Danny almost walked past. Click here to view the printable newsletter. More readable than a transcript. Contents Podcast episode on YouTube Episode Proem: No Signage, No Appointment, No Problem Hello. Welcome to 2026 Nurses Week, May 6th through 12th. I’m very proud to be a nurse. I’ve been a nurse for 50 years. And my grandson’s going to nursing school next year. He’s graduating as a senior and will attend Loyola University in Chicago for its nursing program. I’m very proud. I want to tell you a story about one of the most significant things that happened during our trip to Ireland a couple of weeks ago. We were staying in the north-central city of Dublin, Ireland. Across the street, I saw a big white institutional facade with no signage. It looked like the side of the building. Next to it, on its right, was a dome with a more modern sign that read “Ambassador”. So, I went into the hotel and asked, “So what’s this building?” And they didn’t know. I looked it up, and it turned out to be the Rotunda Hospital. The Rotunda Hospital is the oldest freestanding maternity hospital in the world. Midwifery Was Scandalous. He Did It Anyway. Now let me see. I’ve got some notes here. The hospital was founded in 1745 by a man named Bartholomew Mosse, M-O-S-S-E. He was a certified surgeon. His wife and child died in childbirth. After this tragedy, he left Ireland to serve as a doctor with the British Army. While he was away, he received midwifery training at a hospital in Paris and obtained his midwifery license, which was unusual. In fact, fellows of the Royal College of Physicians were even penalized if they practiced midwifery. But Mosse wanted to change that. So, he built this small place, 10 beds, that… Let’s see, when did it open? I guess it opened in 1745. Mosse’s ambition was to build a dedicated maternity hospital in Dublin to provide medical care and shelter to the city’s penniless mothers. This came after he encountered unspeakable conditions during his practice, particularly in the aftermath of the 1739 famine. So he established this 10-bed hospital. It was in a small theater called the New Booth Theatre. It says here that it was the first lying-in hospital of its kind in the world. It had only 10 beds, but in its first year, 190 babies were born, and just one mother died. But obviously, they couldn’t meet demand with 10 beds. When No One Funds Poor Mothers, Try Dancing Mosse tried to raise money to build a larger hospital, but nobody really wanted to give money to poor women. So he happened to attend the world premiere of Handel’s Messiah on April 13, 1742. While he was there, he was inspired to raise money by entertaining the wealthy. Somebody sent me a picture of the Handel statue that’s in front of the theater where the premiere was, which I thought would be interesting. According to my research, on the evening of April 13th, 1742, Handel conducted the world premiere of his Messiah on Dublin’s Fishamble Street, and Mosse was present. Historians suggest that this moment crystallized Mosse’s idea of using high-society entertainment to fund a hospital for the poor. So Mosse turned the proposed hospital site into a pleasure garden with a live orchestra, theatrical performances, and dances in a coffee house, marrying philanthropy with frivolity to reach the wealthy. Debt, Daring Escape, Death Here’s a little interesting tidbit. Lotteries nearly destroyed Dr. Mosse. Before he was able to return to Ireland, he was arrested and charged with being 200 pounds in debt, and he’s thought to have been imprisoned in Beaumaris Castle in Anglesey, Wales. The story was that he managed to escape through a window and hid in the Welsh mountains for three weeks before reaching Ireland. He then vindicated himself by publishing his receipts and lottery accounts, whatever. But less than a year after the hospital opened, he was taken seriously ill, exhausted, heavily in debt, and petrified about the prospect of arrest and imprisonment. He died on February 16th, 1759. Fix the Air, Save the Babies. Then and Now. Around 1781, when the hospital was poorly ventilated and every sixth child died within nine days of birth, they realized the problem was poor ventilation. Ventilation was improved, and mortality dropped to 1 in 20 over the following five years. They’re also planning to celebrate their millionth birth in 2026. It’s just amazing. I met a saleswoman in a sweater store who asked where we went in Dublin. When I told her about the Rotunda Hospital, she said she had a difficult pregnancy and birth without insurance. She received care at the Rotunda Hospital, with her baby in neonatal intensive care for three weeks and herself as an inpatient for two weeks. Awesome care! So, when we were there, I, an old white guy in a wheelchair, motored into the Rotunda Hospital and stopped at the registration desk to ask if I could speak with someone. I had not made an appointment. I was leaving the next day. Very nice people. I tried to get hold of people in their library, research, and marketing, but they were busy, of course. Oldest? It’s Relative. I’m really impressed by the idea of being the world’s longest-operating specialist hospital. I was trying to get some perspective on that, so I looked up the oldest continuously operating hospitals, and here’s what I learned. I learned that in the United States, the oldest continuously operating hospital is Bellevue Hospital in New York City, which opened in 1736 as a six-bed infirmary.[1] So, it began as a haven for the indigent and is still a major public hospital on the East Side of Manhattan. It opened nine years before Mosse opened his first lying-in hospital. The other long-running hospital is the Pennsylvania Hospital in Philadelphia[2], established in 1751 by Benjamin Franklin and Dr. Thomas Bond. It’s still operational as part of the University of Pennsylvania Health System. The oldest hospital is the Hôtel-Dieu in Paris[3], which officially opened in 650 AD, and that’s the hospital where Mosse became a midwife. There’s St. Bartholomew’s Hospital in London, founded in 1123[4]. And there’s the Hospital de Jesús Nazareno in Mexico City, opened in 1524. But really, the Rotunda is the oldest maternity-only specialist hospital, continuously operating in the world, which is a more specific and arguably more impressive claim than the general acute care hospitals Bellevue and Hôtel-Dieu, which have both moved buildings, changed missions, and been rebuilt. The Rotunda has been delivering babies in the same building since December 8th, 1757. That’s really something. Reflection: Nightingale Was Here Too So, let’s bring this back to Nurses Day and to Florence Nightingale. Interestingly, Sara E. Hampson was one of the original Nightingale nurses and the first lady superintendent of the Rotunda Hospital in 1891. So yay, nursing. Yay, history. I’m really looking forward to exploring more of this amazing hospital in Dublin. I wonder who was in charge all these years, and how it survived past Mosse and through those first decade or first few years? And then, how did the Rotunda Hospital survive war, famine, pandemics, and technological change? What research occurred there? Is there a diaspora of Rotunda alumni? Anyway, more to come. Thanks. Referenced in episode [1] By Harper’s Weekly – Harper’s Weekly, Public Domain, https://commons.wikimedia.org/w/index.php?curid=6014479 [2] William Strickland (1788-1854) Engraver: Samuel Seymour (1796-1823), Public domain, via Wikimedia Commons [3] I, Clio, CC BY-SA 3.0 , via Wikimedia Commons [4] See page for author, CC BY 4.0 , via Wikimedia Commons Are you part of the Rotunda Hospital diaspora? Find me at dannyhealthhats@gmail.com. Tell me your version. Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Substack Patreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: editing and site management Oscar van Leeuwen: video editing Julia Higgins: Digit marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection Claude, Perplexity, Auphonic, Descript, Gramm

    15 min

  2. Apr 18

    Participatory Governance: Right People Right Question

    Participatory governance in healthcare means asking the right people the right questions. Three stories where listening as leadership changed everything. Summary This episode is about listening as leadership — the gap between where knowledge lives and where decisions get made, and what it costs when we pretend that gap doesn’t exist. Three stories from my career as a nurse manager, quality director, and VP — three moments where participatory governance in healthcare produced the same result: a no to the status quo. Not a radical no. An obvious one. Obvious, that is, once someone finally asked the people living inside the system. Topics covered: Open visiting hours in the ICU — and what happened when staff pushed back Seven therapy visits, no prior authorization required — and what happened when the company was acquired A disability services resident on a board of directors — and the simple fix that improved every patient experience metric Why participatory governance is the fastest, cheapest diagnostic tool most health system leaders never use The honest difference between patient advisory boards and actually sharing power with patients What patient-centered care looks like when it moves beyond consultation into real shared decision making Click here to view the printable newsletter. More readable than a transcript. Contents Podcast episode on YouTube Episode Proem I’ve spent most of my career in institutions, hospitals, managed care companies, and disability services agencies. These are large, slow-moving systems with their own inertia, logic, and knack for designing processes that work best for billing, and not so well for those receiving or providing services. I should know. I’ve been inside these systems as a clinician, boss, consultant, caregiver, and patient. The boldest changes I was part of didn’t come from a consultant’s report. They didn’t come from a board retreat or a leaders’ strategic planning day off-site — though, Lord knows, I’ve sat through plenty of those. They came from the moment when someone, usually someone with very little institutional power, said: This doesn’t work. It’s hurting us. The hardest part wasn’t hearing that. The hardest part was finding the gumption to act. Institutions are good at explaining why things are the way they are. They have binders of policies for that. My secret as a consultant was embarrassingly simple: the people who hired me already had the answers they needed. The nurse who’d been there fifteen years knew. The member who couldn’t get her calls returned knew. I sought them out, listened, and translated their words into a PowerPoint that the boardroom could hear. I want to tell you about three times I got it right. Three moments when the change that mattered was a no. No to visiting hours that kept families from the people they loved. No to a prior authorization process that treated patients and clinicians like suspects and required an army to administer that suspicion. No to a system that let care aides disappear from people’s lives without warning or goodbye, as if the people whose lives they were in didn’t deserve a heads-up. None of these nos were mine originally. I heard them from a family pacing a waiting room, from a member who couldn’t get the help she needed, and from a man with a disability who sat on our board and told us, plainly, what it felt like to wake up one day to find that someone essential to his life was simply gone. Participatory governance sounds like it belongs in a policy manual, right between stakeholder alignment and learning organization. When participatory governance works, it’s permission. Permission for the people living and working within a system to tell the truth about it. And the willingness, on the part of whoever’s in charge, to let that truth land. Even when it’s inconvenient. Especially then. Part 1: ICU Doors Open My first experience as a boss was as an ICU nurse manager, a job I got, I should mention, without ever having worked in an ICU or having been a boss. A story for another day. The honeymoon was short. Strictly prescribed visiting hours, ninety minutes in the morning, ninety in the evening, were leaving families miserable. I could see it. They could feel it. In collaboration with my bosses, the ICU medical director, and the chief nurse, I eliminated visiting-hour limits entirely. My staff, who had recruited me for the role, now deeply regretted it. I hadn’t consulted them or thought through the workflow implications. They were furious, and they weren’t wrong to be. But we kept the visiting hours open. Over time, something shifted. I learned how to be a boss. Nurses learned to include families in care and treatment. Patients and families arrived home better prepared. Physicians, for their part, didn’t much care either way. The lesson I learned: this was a story about control. Mine, the nurses’, and ultimately the families’. We eventually set up an informal patient and family advisory group, not because I had planned to, but because we needed them in the room. Part 2: Seven Visits, No Questions Asked My job title was Director of Quality at a behavioral health managed care company. If you’ve spent any time in managed care, you know what that means: Director of Trying to Get an A+ in Every Measure, Whether It Has Meaning or Not. Prior authorization was the centerpiece. A member needs therapy. Their provider submits a request. Someone on our end reviews it, approves or denies it, requests more information, waits, and follows up. The member waits. The provider waits. And somewhere in all that waiting, the person who needed help either got it, gave up, or got worse. I inherited this process. I did not invent it. My boss and I set up an advisory group with members on one side and providers on the other. We asked about their experiences with our company. They were not subtle. Members said the pre-auth process made them feel they had to prove they deserved care. Providers said the company’s default assumption was that they were lying. Neither response was a ringing endorsement. So, we experimented: seven visits, upon request. No authorization required. If a member or their provider asks, they get them. No forms, no review, no waiting. The result: outcomes held. Members received care faster. Providers stopped spending half their administrative time on the phone with us. And our call center, the engine room of the prior authorization machine, grew quieter. Then quieter still. A substantial portion of our staff spent all day managing a process that, in large part, was designed to manage itself. Strip it out, and you didn’t need nearly as many people to run it. The bureaucracy wasn’t protecting anyone. It was the cost. We had real data. Member satisfaction trended up. Providers, for the first time in recent memory, said something positive about the company. The advisory group had surfaced a truth that no quality metric had found, because no quality metric had asked the right people the right question. Then the company was acquired. New owners, new priorities, no appetite for any of this. The program was terminated, and the advisory group disbanded. I can only assume the prior authorization process resumed its proud tradition of making everyone miserable in the name of oversight. I learned that participatory governance surfaces the truth faster than most quality improvement methodologies I’ve encountered. But institutions don’t always want the truth. Sometimes they want the process. The process is familiar. It distributes responsibility. It means nobody has to decide. The advisory group uncovered a truth. It turned out that the people who bought the company got a veto. Part 3: The Right to Say Goodbye There’s a particular kind of organizational meeting where everyone knows something is wrong, the data is right there on the slides, and somehow the conversation goes nowhere. Lots of nodding. Lots of concern. Lots of commitment to further analysis. I worked as VP of Quality at an organization supporting forty thousand people with disabilities, many of them living in group homes, relying on personal care aides for the most intimate parts of daily life. Getting dressed. Eating. Toileting. Moving through the world. At my first Board meeting, we reviewed satisfaction survey results, which were poor. They were not nuanced, requiring careful interpretation. They told us something was bad. And we were doing what organizations do: analyzing, discussing, and scheduling follow-up meetings to review the analysis. We were not asking the people who lived there. The agency was committed to resident/patient participation in governance committees, including the Board; in this case, a resident of one of our group homes served on the Board. Not as a symbol. As a Board member. At one of these meetings, in the middle of what was shaping up to be another productive session of collective concern, he said something that stopped the room. He said: People leave without warning. A personal care aide, someone who helps you start each day, who knows how you take your coffee, which jokes make you laugh, and how you like your blanket folded, is just gone one morning. No notice. No goodbye. Someone new shows up, and you’re expected to adjust. He said it plainly, not as an accusation but as a fact. He apparently assumed, incorrectly, that we already knew. We didn’t. Or rather, someone knew. The people living in the homes knew. The aides probably knew. It just hadn’t made it into the meeting room until he put it there. The fix was insultingly simple. When an aide left, for any reason, residents would be told in advance. A chance to say goodbye. A proper introduction to whoever came next, rather than a key, an address, and good luck. That was the intervention. Advance notice, a goodbye, a hello — the basic courtesies w

    20 min

  3. Mar 1

    Crutches, Caves, and Currents: Tubing in Belize

    Health Hats walks & floats through ancient Maya caves in Belize with forearm crutches, teamwork, trust, and shared decision-making every step of the way. Watch this episode on YouTube. Audio is published, but not the same Podcast episode on YouTube Summary What does it take to go cave tubing in Belize when you use forearm crutches and have no electric wheelchair? For Danny van Leeuwen, it takes the 3 T’s: Time (a half-mile walk), Trust (in guides and companions), and Talk (real-time decisions about stairs vs. river crossings). HHP245 is a first-person GoPro video of Danny floating through the sacred Caves Branch River — ancient Maya ceremonial grounds — with his wife and friend Linda. It’s part adventure, part health advocacy, and part proof that with the right team, you can push your capabilities further than you thought. Click here to view the printable newsletter with images. More readable than a transcript. Contents Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Substack Patreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: editing and site management Oscar van Leeuwen: video editing Julia Higgins: Digit marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci   Inspired by and Grateful to: Mike and Linda DeRosa, Ann Boland, Ruben, David, and all our guides and helpers Photo Credits for Videos All by Danny van Leeuwen using GoPro10  Referenced in episode Nohoch Che’en Caves, Branch Archeological Reserve, Episode Proem I delight in pushing the boundaries of my capabilities. In Belize, floating in a tube through caves and snorkeling stretched me. How can tubing stretch anything? It’s passive floating. The event included a mile-long walk to the cave entrance – relatively flat with some steps and wading across the river, a mere six-inches deep. No electric wheelchair, just my forearm crutches. Our guide and my compatriots shared in the decision-making and assisted me. This video episode was taken with a GoPro camera hanging around my neck. Watch the video. Reading will not give you the flavor. Narrative Let me tell you a little bit about where we are what you’ll see. Excuse me, as I will be certainly butchering some of the names of stuff. So where we are is Nohoch Che’en Caves, Branch Archeological Reserve, also called the Caves Branch River. It’s in the Cayo District, and districts are like provinces or states. It’s by far the most famous cave tubing destination in Belize and one of the most unique in the world. So this was sacred to the ancient Maya. They were considered portal to Xibalba, the Maya underworld. This wasn’t just mythology. The Maya actively used these caves for religious rituals and ceremonies, particularly during times of drought when they needed to communicate with the rain God, chaac. I don’t know. Archeologists have found ceramic offerings, jade artifacts and human remains inside; evidence of sacrificial rights dating back over 2000 years. The caves were largely forgotten after the Maya civilization declined and weren’t widely known to the outside world until the 1980s and nineties when the Belizean guides and explorers began documenting them and it became a active tourist destination in the early two thousands. So the Caves Branch River flows through a network of limestone caves carved out over millions of years. The system I floated on. Is part of a much larger Karst landscape riddled with interconnected caves. Some of them still unexplored. Pretty amazing, huh? Reflection That was it. Fifteen minutes of about an hour total time and 30 minutes of recording. I hope it gives you a flavor of what we did. It was awesome. I will be producing a couple more videos from Belize over the next few months. The next video will be of the Mayan ruins, then making tortillas and tamales, and then, we’ll see. Related episodes from Health Hats https://health-hats.com/pod223/ https://health-hats.com/pod191/ https://health-hats.com/pod164/ Artificial Intelligence in Podcast Production Health Hats, the Podcast, utilizes AI tools for production tasks such as editing, transcription, and content suggestions. While AI assists with various aspects, including image creation, most AI suggestions are modified. All creative decisions remain my own, with AI sources referenced as usual. Questions are welcome. Creative Commons Licensing CC BY-NC-SA This license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format for noncommercial purposes only, and only so long as attribution is given to the creator. If you remix, adapt, or build upon the material, you must license the modified material under identical terms. CC BY-NC-SA includes the following elements:    BY: credit must be given to the creator.   NC: Only noncommercial uses of the work are permitted.    SA: Adaptations must be shared under the same terms. Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines. Disclaimer The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

    23 min

  4. Feb 8

    If You Have a Body, You’re an Athlete: Training for MS

    Former Nike exec Mark Hochgesang interviews Danny on Heavy Hitter Sports Podcast about MS & being an adaptive athlete. Just back from Belize! Training works. Summary My friend Mark Hochgesang, former Nike exec and host of Heavy Hitter Sports, recently interviewed me. While I usually wear my life on my sleeve on Health Hats, this conversation revealed something different—how I think about myself as an adaptive athlete. Phil Knight’s mantra: “If you have a body, you’re an athlete.” I never thought of it that way until Mark helped me see it. Training to travel? That’s athletic training. Loading a 60-pound wheelchair into an SUV? Strength work. Walking 3,500 steps a day with MS? Competition with myself. Here’s what we covered: 🧠 The Swiss cheese brain scan – My MS diagnosis story (turns out I’d had it for 25 years) 🎷 The baritone saxophone – My neurologist’s #1 prescription for MS. Music creates new neural pathways. 🚶 The 3,500-step goal – Why movement is non-negotiable, even with foot drop and proprioception issues 💪 The “every other day” rule – Setting yourself up for success (stretching, balance, upper body work, squats) 😤 The two-minute bitch – No “happy horseshit” allowed. Life with MS sucks sometimes. Two minutes to vent, then move forward. 🌍 Training to travel – From 70 miles of Camino de Santiago to just returning from Belize (videos coming!) 👨‍👩‍👦 The team – Wife (OT), sons, grandkids (my scouts!), medical team, massage therapists, the Cuban van driver who didn’t speak English 🎯 The win – People understanding that disability takes many forms and asking “How can I help you?” instead of aggressively helping 💡 The legacy – Being remembered as “the cool Opa” The biggest lesson? Build a team. You can’t do this shit alone. Click here to view the printable newsletter with images. More readable than a transcript. Contents Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Substack Patreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: editing and site management Oscar van Leeuwen: video editing Julia Higgins: Digit marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci Inspired by and Grateful to: my entire team Photo Credits for Videos Featured Image by Mark Hochgesang Referenced in episode Heavy Hitter Sports Episode Proem Mark Hochgesang, a former Nike exec and my podcasting buddy, recently hosted me on his podcast, Heavy Hitter Sports. You all know I wear my life on my sleeve and take any opportunity to talk about myself. I’m sharing this episode of Mark’s because it reveals a different story of my abilities and self-image, which I now tell through my collaboration with Mark and his deep understanding of sports. Redefining Athletic Performance Mark: Welcome to Season 4 of Heavy Hitter Sports, where we talk to inspirational figures in the world of sports. Athletes come in many shapes and sizes, and not all heroes perform on a big stage. Today’s episode is a bit different and one that I’ve long been looking forward to. It’s focused on how we adapt to unplanned life changes and adversity, then train, compete, and battle to win on our own terms. My guest is a good friend and fellow podcaster, Danny van Leeuwen. Danny is a former nurse, healthcare executive, musician, traveler, and a man who has lived with multiple sclerosis for many years. This is not a tale about limitations or illness. It’s a story about focus, fortitude, optimism, preparation, and team-building to live an amazing life. Danny’s story as an adaptive athlete challenges us to rethink what strength, toughness, and success look like. If you care about maintaining optimal health, sharpening your mindset, and winning the long game, this is the episode for you. Danny, welcome, my good friend. I’m looking forward to catching up and talking to you about some of the challenges that have been thrown your direction in life. And I’d like to open by getting your thoughts on this Nike mantra first uttered by Phil Knight, who said, “If you have a body, you’re an athlete”. Your thoughts on that sentiment? Danny: I never really thought about that until I met you, listened to your podcast, and delved into them. And it made me think about when I was getting ready to travel. When I put it in the frame that I was training to travel somewhere, then I started thinking, oh, that’s what Mark is talking about. Then it made me think. So never before. That was like the first time. I like it. I really like it, actually. It’s empowering. Nerd to Athlete Mark: Now, as a child, when you were growing up, you probably spent more time in libraries than you did on ball fields, correct? Danny: I did. I was a total nerd. I had two left feet. I remember the day I learned to skip. I just thought it was one of the coolest moments of my life. Oh, I can do this. It’s interesting. No matter how old we are, Mark: We can always remember skipping. But at some point in our lives, we skip for the last time, and we never know when that’s going to be. And then you can never get it back. Yes. You recently said something I absolutely love: you like feeling like an athlete. What does being an athlete mean to you today? Danny: What it means is my goal is optimal functioning. And when I say functioning, it means physical, mental, and spiritual. Like most people, I have things beyond my control, like my genetics, my situation, and my culture. And when I look at an athlete, and I think, oh my goodness, what did they do that they’re at a peak for performance, whether it involves a ball or whether it involves something else? It’s amazing, and it’s empowering. Now, there’s a downside. When I look at athletes, I also think they’re pushing their limit. And every game, you see somebody who’s past their limit, and they have an injury. And so for me, I think of it a little differently in that I don’t want to have the injury. Like for me, the biggest danger is falling. And so I want to fall as infrequently as possible. I don’t want to hurt myself. So that might be a little bit different than an athlete. Coaching Mark: That’s interesting because when we were together a couple months back, when you were in Portland here for a conference, and I took you to the Blazers game, they were playing the Warriors and Steph Curry. Now, Steph, although he started in college as injury-prone, has had a really injury-free pro career. And that’s been all the difference for him. But I think every top-flight athlete fears the moment where it ends because an Achilles rips, a hamstring, whatever the injury might be, it’s ever-present. You can’t be thinking about it 100% of the time, or hopefully at all. There are those moments where a career ends. Danny: The frame of being an athlete is very empowering. It feels like it gives me agency, control. I can train. I can modify. I can be coached. My wife’s an OT, an occupational therapist, and she is always thinking about being sure there are no throw rugs in the house. She put bars up in the bathroom. You get people who help you, coach you, and help modify stuff. Competing Mark: Your comments also make me think athletes are always competing. And as a man with multiple sclerosis, you’re always competing too in your own way. How does that competitive fire show up daily for you? Danny: That’s a good question. I am both like so not competitive, but I’m very competitive with myself. Like, why can’t I go on that trail? Okay, now what is it going to take for me to go in my wheelchair on that trail? Okay, I got my wheelchair and my crutches. Okay, I can go this far with the chair, then get out of it, and go up those steps or across that bridge with all these gaps in the boards. Mark: That makes me think, too, that athletes, to be truly confident, have to prepare to the best of their ability. And that’s what you’re talking about, right? Calculated Risks Danny: Yeah, I believe in calculated risks, but they’re calculated. I’m still not going to go across the street in my chair without looking both ways. And I can see that, with the people I’m with, their comfort with my sense of risk really varies over time. My wife would just be freaking out over some of the stuff I do. And I have to manage that too. Mark: So let’s flashback in time to 2009 and the moment when you’re first diagnosed with MS. Can you talk about that moment when you get your call from the primary physician and then later the neurologist? What went through your mind at that moment? Diagnosis – Finally Danny: I had been feeling that something was wrong. We had just moved to Boston, and I was working at Boston Children’s. I had found a really good primary care physician. I kept saying to her, “Something is wrong.” She took me seriously and sent me to different specialists. Mostly, they just said, “Nah, nah, nah.” Finally, she said, “Oh, screw it. Let’s just get a brain scan.” She ordered the brain scan, not the neurologists or the whatever specialists. It was obvious that I had it. So she called and said, “OK, I need you to sit down.” I had this office that was like a closet with four people in it. There was no privacy. But we were right by a garden. So I went out in the garden and sat on a bench. She said, “OK, here’s what I found.” At first, I was so relieved. Like, it’s a diagnosis. It made sense. And then I’m a sort of delayed-reaction kind of person with bad news. And then

    34 min

  5. 12/28/2025

    Retirement Improvisation – Onward: 2025 Holiday Letter

    Health Hats Danny celebrates 50 – years with his honey & pounds lost. With gratitude for privilege, & best health thru family, media, music, travel, & advocacy. Summary Think of 2025 as Danny’s Sofrito year—familiar and unexpected ingredients simmering together. The base: 50 years married, daily saxophone practice, steady MS management. The aromatics: Cuban jazz immersion, co-founding a Personal Health Data Bank, and celebrating with old friends on Bloom Mountain. The heat: losing 50 pounds, earning $150 as a “professional” musician, and learning from his grandsons. What makes sofrito work is the slow sauté, the patient layering of flavors. Danny’s learning the same with music (leave white space), with health (five out of ten is excellent), and with AI (it changes the work but doesn’t replace Mom’s feedback). Between PCORI Board meetings, podcast production, band rehearsals, and startup strategy sessions, he’s discovered that retirement’s spicy complexity comes from knowing when to drop out, when to join the rhythm section, and when to let the energizing endorphins carry you through disturbing times. The recipe? Nap whenever and keep improvising. Click here to view the printable newsletter with images. More readable than a transcript. Contents Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Substack Patreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: editing and site management Oscar van Leeuwen: video editing Julia Higgins: Digit marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro and outro Claude, Auphonic, Descript, Grammarly, DaVinci, Whisper Transcription Podcast episode on YouTube Inspired by and Grateful to: All of you! Photo Credits for Videos 50th Anniversary images by Patti Harris, Rich Rieger, Jodi Buckingham, Ann Boland, Christine Higgins, and me Swiss cheese image by Rahul Pugazhendi on Unsplash Nourish image by Santiago Lacarta on Unsplash Cuba images by Ann Boland, Richard Fish, Gisselle Perez, and me Zoom images by Michael Chaffin and Steve Heatherington Links and references The Curse of an Aching Heart Music by Al Piantadosi, Lyrics by Henry Fink 1913 played by the Summer Street Stompers https://health-hats.com/wp-content/uploads/2025/12/The-Curse-of-an-Aching-Heart-20251206.mp3  Referenced in episode Dan Fox and Morningside Studios,  the Havana Music School, the Havana Jazz Festival Lechuga Fresca Latin Band and Summer Street Stompers Dixieland Band Research partnerships and participatory governance of AI Personal Health Data Bank https://goodlistening.org Episode Proem I love retirement. I have plenty to do on my own schedule. I can nap almost whenever I want. I‘m no better at saying no. Every day feels rich, although I don’t always know what day it is. From Mom to AI My podcast about best health continues to flourish and nourish. Thank you very much. I embrace the tension between creativity and productivity as I test new approaches and media. I published fifteen new episodes in 2025, plus 32 YouTube episodes, and countless social media shorts. What do you think of my new intro and outro? Grandsons Leon and Oscar encouraged me to update them. Leon has been updating my website, as a growing proportion of people access my back catalog. Both Leon and Oscar advise me on direction, content, and strategy, especially using social media. I meet regularly with my virtual, supportive, and challenging podcasting peeps. I enjoy experimenting with AI in production to find and create images and suggest brief descriptions and section headings. My favorite prompt is “Suggest three ironic titles, brief descriptions, and section headings, a tech-savvy teen would appreciate.” I rarely use the suggested responses, but I chuckle and take an unexpected path. AI does not make me more productive; it changes the work a tad. When I first started blogging, I would read draft episodes to my mom. Her feedback was more often helpful than AI’s. I miss my mom. 50 Years of Love and Privilege Roasted The highlights of the year included celebrating our 50th wedding anniversary with old friends and my grandsons. Our son, Ruben, served as Master of Ceremonies. Nine people from our 1975 wedding joined us in July on Bloom Mountain in West Virginia to tell stories. We played the Dating Game and Danny and Ann Trivia. We, rather, I, got roasted. Oscar, Bruce Kimmel, and I played Simple Gifts on clarinet, bass, and baritone sax. We sang Simple Gifts at our wedding. Listeners and viewers, you can find full performances of this and other referenced tunes at the end of the podcast. Readers, click the links in the transcript or check the show notes. Rolling in Cuba Another highlight was our week-long trip to Cuba for a music extravaganza. Dan Fox and Morningside Studios arranged it, and the Havana Music School hosted a week of the Havana Jazz Festival, daily lessons and ensemble work, culminating in a gig at a restaurant attended by many Havana musicians in town for the Festival. One of the tunes I recorded from the gig, “Sofrito” by Mongo Santamaria, has had 48,000 views on YouTube as of this writing. Before this, my most-viewed videos had 300 views. I’m grateful to Pachy Silveria for saxophone instruction and to Claudia Fumero and Gisselle Perez for their kindness in hosting. I worried about wheelchair access before we went to Cuba, but I needn’t have. My wheelchair was no more of a barrier there than it is anywhere else. Too Many and Too Few Horns Speaking of music, I’m playing in two bands now-Lechuga Fresca Latin Band and Summer Street Stompers Dixieland Band. Lechuga Fresca is reconstituting after several musicians moved on to other projects. I’m often the only horn player at rehearsals, while we have five horn players in the Summer Street Stompers. Too few and too many. Both situations have challenges. I’ve never had to hold my own in a band completely; usually, I hide behind someone. With a horn section, the music at its best is controlled cacophony. Too many horns are nuts. I’m learning to lay back, not hide, drop out sometimes, join the rhythm section other times, and leave more white space in my solos. I’m grateful to my teacher of 17 years, Jeff Harrington. Oscar and I figure that I must be a professional musician. While I don’t make a living playing, I made $150 this year. I average 1 hour a day with my music, and it feeds my soul and creates new pathways in my Swiss-cheese brain. Best Governance I’m in my sixth year on the PCORI (Patient Centered Outcomes Research Institute) Board, focused on shifting the balance of power in community-research partnerships and in the participatory governance of AI used in research. If reappointed, I’ll enthusiastically re-up for another six years. PCORI has the best Board, leadership, and staff dynamics, as well as the output, of any organization I’ve participated with during my 50-year career. A nod to Jan Oldenburg for outstanding coaching that kept me focused on two goals at a time. Game-Changing Startup A year ago, I would have said serving on the PCORI Board of Governors was the pinnacle of my career but let me tell you about my new career gig. For twenty-five years, I’ve worked with many collaboratives to advance patients’ abilities to turn their health data into useful information to make choices about their health and care. “Gimme my damn data” is a great slogan and first step, but success could be drinking dirty water out of a firehose. I virtually met my start-up partners, Tomas Moras and Marianne Hudgins in April and started working together in August. We’re seeking seed funding to build a Personal Health Data Bank, an owner-controlled health data bank that promotes individual data ownership, safety, security, and trust by storing personal health data from any source and using AI-assisted synthesis to serve the data owner. Data owners’ needs vary. We might need our data for research participation, health data summarization, clinician visit prep, care coordination with family in whatever diaspora, or tracking data over the years, across health systems and locations.  We have a sandbox where we are testing and enhancing existing open-source technology while we figure out participatory governance to address ethical, privacy, and usability issues. We favor a bottom-up rather than a top-down approach as we build community and services for owners and their trusted networks. I’m excited about the challenge of finding the smallest viable community that can use these Data Banks, with everyone making enough money to sustain the banks, service providers, and networks. No data broker would make money on the data. I’m revved up as I learn about a new audience – investors. The diversity of investors rivals that of any culture I’m new to. Onward I traveled to DC, Portland OR, New Orleans, and Colorado. In 2026, we booked a trip to Belize with Linda and Mike DeRosa. We are also planning a trip to Ireland and Wales with my brother-in-law, Paul Boland, I’ll be sharing more about my adventures on my podcast and social media. Best Health Now Oh, I almost forgot. My health is excellent, meaning I spend a decent share of time in a state of best health. Talked to a friend, Shel. How do you answer people when they ask how you are doing? On a scale of 1 to 10, with this administration, the best is a seven. Considering the annoyances of MS, that brings it down to a five. So, how are you doing? Five out of ten is best health.  I lost 50 pounds this year after a Type II Diabetes diagnosis. Mobility remains steady, though I was slowing down before the weight loss. I ra

    25 min

  6. 11/24/2025

    A Third on the Shelf: Rethinking Power in Community Research

    Kirk & Lacy on shifting research funding away from federal grants: what happens to community partnerships when the money—and the rules—change? Summary Three Audiences, One Report Lacy Fabian and Kirk Knestis untangle a fundamental confusion in community health research: there are three distinct audiences with competing needs—funders want accountability, researchers want generalizable knowledge, and communities want immediate benefit. Current practice optimizes for the funder, producing deliverables that don’t help the people being served. The alternative isn’t “no strings attached” anarchy but rather honest negotiation about who benefits and who bears the burden of proof. Kirk’s revelation about resource allocation is stark: if one-third of evaluation budgets goes to Click here to view the printable newsletter with images. More readable than a transcript. Contents Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Substack Patreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: editing and site management Oscar van Leeuwen: video editing Julia Higgins: Digit marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci Podcast episode on YouTube Inspired by and Grateful to: Ronda Alexander, Eric Kettering, Robert Motley, Liz Salmi, Russell Bennett Photo Credits for Videos Data Party image by Erik Mclean on Unsplash Pendulum image by Frames For Your Heart on Unsplash Links and references Lacy Fabian, PhD, is the founder of Make It Matter Program Consulting and Resources (makeitmatterprograms.com). She is a research psychologist with 20+ years of experience in the non-profit and local, state, and federal sectors who uses evidence and story to demonstrate impact that matters. She focuses on helping non-profits thrive by supporting them when they need it—whether through a strategy or funding pivot, streamlining processes, etc. She also works with foundations and donors to ensure their giving matters, while still allowing the recipient non-profits to maintain focus on their mission. When she isn’t making programs matter, she enjoys all things nature —from birdwatching to running —and is an avid reader. Lacy Fabian’s Newsletter: Musings That Matter: Expansive Thinking About Humanity’s Problems Kirk Knestis is an expert in data use planning, design, and capacity building, with experience helping industry, government, and education partners leverage data to solve difficult questions. Kirk is the Executive Director of a startup community nonprofit that offers affordable, responsive maintenance and repairs for wheelchairs and other personal mobility devices to northern Virginia residents. He was the founding principal of Evaluand LLC, a research and evaluation consulting firm providing customized data collection, analysis, and reporting solutions, primarily serving clients in industry, government, and education. The company specializes in external evaluation of grant-funded projects, study design reviews, advisory services, and capacity-building support to assist organizations in using data to answer complex questions.  Referenced in episode Zanakis, S.H., Mandakovic, T., Gupta, S.K., Sahay, S., & Hong, S. (1995). “A review of program evaluation and fund allocation methods within the service and government sectors.” Socio-Economic Planning Sciences, Vol. 29, No. 1, March 1995, pp. 59-79. This paywalled article presents a detailed analysis of 306 articles from 93 journals that review project/program evaluation, selection, and funding allocation methods in the service and government sectors. Episode Proem When I examine the relationships between health communities and researchers, I become curious about the power dynamics involved. Strong, equitable relationships depend on a balance of power. But what exactly are communities, and what does a power balance look like? The communities I picture are intentional, voluntary groups of people working together to achieve common goals—such as seeking, fixing, networking, championing, lobbying, or communicating for best health for each other. These groups can meet in person or virtually, and can be local or dispersed. A healthy power balance involves mutual respect, participatory decision-making, active listening, and a willingness to adapt and grow. I always listen closely for connections between communities and health researchers. Connections that foster a learning culture, regardless of their perceived success. Please meet Lacy Fabian and Kirk Knestis, who have firsthand experience in building and maintaining equitable relationships, with whom I spoke in mid-September. This transcript has been edited for clarity with help from Grammarly. Lacy Fabian, PhD, is the founder of Make It Matter Program Consulting and Resources. She partners with non-profit, government, and federal organizations using evidence and storytelling to demonstrate impact and improve program results. Kirk Knestis is an expert in data use planning, design, and capacity building. As Executive Director of a startup community nonprofit and founding principal of Evaluand LLC. He specializes in research, evaluation, and organizational data analysis for complex questions. 1. Introductions & Career Transitions Kirk Knestis: My name’s Kirk Knestis. Until just a few weeks ago, I ran a research and evaluation consulting firm, Evaluand LLC, outside Washington, DC. I’m in the process of transitioning to a new gig. I’ve started a non-profit here in Northern Virginia to provide mobile wheelchair and scooter service. Probably my last project, I suspect. Health Hats: Your last thing, meaning you’re retiring. Kirk Knestis: Yeah, it’s most of my work in the consulting gig was funded by federal programs, the National Science Foundation, the Department of Ed, the National Institutes of Health, and funding for most of the programs that I was working on through grantees has been pretty substantially curtailed in the last few months. Rather than looking for a new research and evaluation gig, we’ve decided this is going to be something I can taper off and give back to the community a bit. Try something new and different, and keep me out of trouble. Health Hats: Yeah, good luck with the latter. Lacy, introduce yourself, please. Lacy Fabian: Hi, Lacy Fabian. Not very dissimilar from Kirk, I’ve made a change in the last few months. I worked at a large nonprofit for nearly 11 years, serving the Department of Health and Human Services. But now I am solo, working to consult with nonprofits and donors. The idea is that I would be their extra brain power when they need it. It’s hard to find funding, grow, and do all the things nonprofits do without a bit of help now and then. I’m looking to provide that in a new chapter, a new career focus. Health Hats: Why is this conversation happening now? Both Kirk and Lacy are going through significant changes as they move away from traditional grant-funded research and nonprofit hierarchies. They’re learning firsthand what doesn’t work and considering what might work instead—this isn’t just theory—it’s lived experience. 2. The Catalyst: Why This Conversation Matters Health Hats: Lacy, we caught up after several years of working together on several projects. I’m really interested in community research partnerships. I’m interested in it because I think the research questions come from the communities rather than the researchers. It’s a fraught relationship between communities and researchers, often driven by power dynamics. I’m very interested in how to balance those dynamics. And I see some of this: a time of changing priorities and people looking at their gigs differently —what are the opportunities in this time of kind of chaos, and what are the significant social changes that often happen in times like this? 3. The Ideal State: Restoring Human Connection Health Hats: In your experience, especially given all the recent transitions, what do you see as the ideal relationship between communities and researchers? What would an ideal state look like? Lacy Fabian: One thing I was thinking about during my walk or run today, as I prepared for this conversation about equitable relationships and the power dynamics in this unique situation we’re in, is that I feel like we often romanticize the past instead of learning from it.   I believe learning from the past is very important. When I think about an ideal scenario, I feel like we’re moving further away from human solidarity and genuine connection. So, when considering those equitable relationships, it seems to me that it’s become harder to build genuine connections and stay true to our humanness. From a learning perspective, without romanticizing the past, one example I thought of is that, at least in the last 50 years, we’ve seen exponential growth in the amount of information available. That’s a concrete example we can point to. And I think that we, as a society, have many points where we could potentially connect. But recent research shows that’s not actually the case. Instead, we’re becoming more disconnected and finding it harder to connect. I believe that for our communities, even knowing how to engage with programs like what Kirk is working on is difficult. Or even in my position, trying to identify programs that truly want to do right, take that pause, and make sure they aim to be equitable—particularly on the funder side—and not just engage in transactions or give less generously than they intend if they’re supporting programs.

  7. 11/02/2025

    Give Me My Damn Data. Then What? Managing Permissions.

    Your health data belongs to you—but how can you share it safely? Fabienne Bourgeois, MD, exposes the complex truth about privacy, permissions, and data control. Summary According to Fabienne Bourgeois, MD, patients want control over their health data, but privacy preferences and constant changes complicate this. The discussion is relevant to people with disabilities, caregivers, and others navigating complex health information. About 80% of people share common privacy concerns that current systems can’t address. The remaining 20% need more detailed controls and customization, though balancing autonomy with privacy remains challenging. Ownership means individuals have the right to participate in research and make informed choices. They need “digital intermediaries”— professionals who assist with data sharing—and genuinely intuitive interfaces. Privacy protections must remain a top priority as health and AI tools continue to develop. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Substack Patreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: editing and site management Oscar van Leeuwen: video editing Julia Higgins: Digit marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci Podcast episode on YouTube Inspired by and Grateful to:  Alexis and Sara Snyder, Amy and Morgan Gleeson, Fatima Mohammed Ighile, Esosa Ighile, Jill Woodworth, Tomas Moran, Marianne Hudgins Photo Credits for Videos 80/20 by Austin Distel on Unsplash Design flaws by Getty Images on Unsplash Privacy by Hector Reyes on Unsplash Links and references Fabienne Bourgeois, MD LinkedIn and Publications National Center for Medical Legal Partnerships Episode Proem The slogan, “Give Me My Damn Data,” began in 2009 with E-Patient Dave DeBronkart as a call for transparency and control: patients arguing that real involvement in their healthcare needs open access to their personal health information. But once we have our data, what will we do with it? Who will we share it with, and in what situations? What are the personal and technical challenges of managing that sharing? I know enough to be dangerous about data-sharing technology. I do understand the personal and relationship sides of data sharing, though. To learn more, I reached out to my former colleague, Fabienne Bourgeois, an Adolescent Medicine doctor and Associate Chief Medical Information Officer (ACMIO) at Boston Children’s Hospital. Fifteen years ago, we worked together, learning from emerging adults about their worries and issues with data sharing. We enjoyed catching up and reviewing the current landscape. For my followers who prefer the written word, this transcript has been lightly edited and organized for readability. When Life Throws Your Kid a Curveball Health Hats: Hi. When did you first realize health was fragile? Fabienne: Oh, that started pretty early on in medical school. I had some very transformative interactions and experiences with patients and families during my medical school rotations, particularly in pediatrics, which really led me to pursue a career in pediatrics. But there really were some extraordinary families. And it just became very apparent that things could change very quickly and that patients and parents were managing patients with really chronic conditions. Regularly, something could change—really change —and we had to be very vigilant about everything. And the families, in particular, were the most vigilant about their child’s care. Emerging Adults Matter Health Hats: When I met you, I think we bonded over the adolescent advisory team. Fabienne: That’s exactly right. Yes. Health Hats: I was so impressed by the adolescents’ engagement and how many of their observations were incorporated into the process and design. I found it to be a model for me. When I went to work for Advocates, Inc. in Framingham, which supported 40,000 people with disabilities, there were a lot of similar issues in terms of a continuum of cognitive, judgment abilities, communication abilities, and styles, and the challenge of understanding their preferences and their challenges, and then hard-wiring that into real life. What you did was open my eyes to a world that I wasn’t aware of before that. I was so impressed by the adolescents’ engagement and how many of their observations Your Medical Records Called—They’re Lost and Separated Health Hats:  Now that I’ve evolved to where I am now of the big project I’m working on is we’re developing a health data bank a receptacle for individuals to store any and all of their health slash medical data, whether it’s EHR claims PDF preferences journals so that then people could authorize the use of their data using a combination of private and public large language models to query that ever expanding and changing data set we’re in the really early stages of seed money. And I’m like, act you’re successful, right? Because when you are successful, it’s bang. It seems to me that the reason I wanted to talk to you was that I see the challenges that emerging adults face in terms of their preferences, rights, and safety as analogous — maybe not the same, but analogous — to language, relationships, and cognition, and that it’s fluid. It’s not like you set some standards. Because every situation is different at a different minute. So, I’ll shut up. One Size Fits All? Please! Fabienne: No, you’re exactly right. You’ve hit the nail on the head. It’s precisely what we are working on and trying to help because it’s very nuanced. And what’s very important is to understand that each patient is an individual, and each individual has particular preferences about who they want to share their information with. And that may be within their family unit or outside it. And we have to honor their privacy preferences. We discuss this particularly in the pediatric and adolescent populations because there are specific state laws and conditions under which adolescent patients can seek care without parental consent. Spoiler: This Affects Way More People Than You’d Think Fabienne: In those situations, we really make sure we maintain privacy in line with the individual adolescent’s preferences. But you’re absolutely right that this extends beyond the adolescent population. We see this often with patients with disabilities or with older adults who have other caregivers or other people who are proxies to their patient portal. So, they’re sharing their information with others, and there’s certain information they don’t necessarily want to share with everyone. And they entrust us with deeply personal information. And they want us to really take care of that information and keep it confidential if they choose to keep it confidential. Sometimes they really just want that conversation to be between them and their care team or their provider specifically. So you’re exactly correct. This really extends beyond the adolescent population. Can We Teach Tech to Understand ‘It’s Complicated’? Health Hats: When I break that down, I think the challenge of taking a pulse, meaning where do they stand at this moment? What do they understand are the nuances or the implications of their decisions? So it’s an understanding of life and self. Then there’s the technical of how. How does that get hardwired into something? And then there’s the interface, so people can go from their understanding, click a few buttons, and get what they want. And so it seems to me that you’re in the middle of all of that and that you can’t do your job if you don’t have excellent teams that can do, not necessarily everybody, but the whole team has to be able to deal with all of that. Fabienne: Yes, you’re exactly right. And it’s tough. It’s very challenging. We’re lucky to have a very strong team in our IT department working on all of these things. But we’re also dependent on the restrictions, capabilities, and functionalities that vendors have in their electronic health records and in the health information exchanges. And I think you noted this previously as well. There’s an explosion in the interoperability space, where we’re not just talking about sharing information with patient portals and proxy-to-patient portals, but across health information exchanges. So, we’re sharing across institutions and, increasingly, with mobile health applications. All-or-Nothing Privacy: The Sledgehammer Approach Fabienne: And all of those have slightly different challenges in how that information is shared and safeguarded within those applications. And then also how individuals can provide preferences for which information is shared. And you’re exactly right: the technical part of this is just as complex as the nuances of the policies, the preferences, the regulations, et cetera. And in some cases, there just isn’t quite the granularity in information segmentation we need to really provide the appropriate preferences for patients and families. So sometimes it’s a very blunt object. We say this note contains confidential information, so no part of it will be shared anywhere. And we lose a lot of critical, valuable information that we would like to share with families and other providers, or that could be beneficial to an app. It’s a very complex challenge. You’re exactly right. Health Hats: Gimme an example. I’m hearing what you say. Because people o

    44 min

  8. 10/06/2025

    Catch-22.0: AI Creates Problems It Solves

    Healthcare AI isn’t a tech problem—it’s a mirror reflecting how our health system already fails. Uncomfortable truths from Datapalooza 2025. Summary We’re asking the wrong questions about AI in healthcare. Instead of debating whether it’s good or bad, we need to examine the system-eating-its-tail contradictions we’ve created: locking away vital data so AI learns from everything except what matters most, demanding transparency from inherently secretive companies, and fearing tools could make us lazy instead of more capable. Privacy teams protect data, tech companies build tools, regulators write rules—everyone’s doing their part, but no one steps back to see the whole dysfunctional picture. AI in healthcare isn’t a technology problem; it’s a mirror reflecting how our health system already falls short with privacy rules that hinder progress, design processes that exclude patients, and institutions that fear transparency more than mediocrity. The real question is whether we’re brave enough to fix these underlying problems that AI makes impossible to ignore. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: editing and site management Oscar van Leeuwen: video editing Julia Higgins: Digit marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci Podcast episode on YouTube Inspired by and Grateful to:  Christine Von Raesfeld, Mike Mittleman, Ame Sanders, Mark Hochgesang, Kathy Cocks, Eric Kettering, Steve Labkoff, Laura Marcial, Amy Price, Eric Pinaud, Emily Hadley. Links and references Academy Health’s Datapalooza 2025  Innovation Unfiltered: Evidence, Value, and the Real-World Journey of Transforming Health Care Tableau  a visual analytics platform Practical AI in Healthcare podcast hosted by Steven Labkoff, MD Episode Proem Here’s the thing about AI in healthcare—it’s like that friend who offers to help you move, then shows up with a sports car. The Iron Woman meant well, but it doesn’t quite meet your actual needs. I spent September 5th at Academy Health’s 2025 Datapalooza conference about AI in healthcare, ‘Innovation Unfiltered: Evidence, Value, and the Real-World Journey of Transforming Health Care. a is Academy Health’s strongest conference for people with lived experience. I’m grateful to Academy Health for providing me with a press pass, which enabled me to attend the conference. I talked to attendees about how they use AI in their work and what keeps them up at night about AI. I recorded some of those conversations and the panels I attended. When I listened to the raw footage, I heard terrible recordings filled with crowd noise and loud table chatter, like dirty water spraying out of a firehose. Aghast, I thought, what is the story here? I was stumped. How can I make sense of this? I had to deliver something. So, here’s how I use AI in my work as a podcaster/vlogger. I used the Auphonic app to clean up the audio and remove noise, and then the Descript app to create transcripts of all the recordings. I went into my Claude podcast Project (a Project is an ongoing thread with everything I’ve done with Claude for my podcast over the past three months). I attached the transcripts and prompted the AI platform to identify themes. OK, that was helpful, but dull. So, I prompted Claude to think like a tech-savvy teen with a sense of humor. Eureka! Now we’re getting somewhere. I edited heavily and then prompted Claude to identify clips of speakers that illustrated the themes. I used the Perplexity app for research. Finally, I did the last written edit with a polish from the Grammarly app. For audio, I returned to the Descript app, found the recommended clips, and extracted them. Then I recorded a video of myself, again using Descript. Compilation editing of the video was done with the DaVinci app. I should give production credit to Auphonic, Claude, Descript, Grammarly, Perplexity, and DaVinci. Paradox, Irony, Catch 22 Datapalooza 2025 showcased the health and care industry’s intense focus on Artificial Intelligence, whatever that means. My podcast acts as a Rosetta Stone to share the excitement of what I learn and deem important in my journey toward best health. How can we use AI safely? Let’s jump in with some lessons I learned. Burying the Treasure to Keep It Safe There’s a Data Privacy Paradox. The very health data that could benefit most from AI faces the most restrictions. Sushmita Macheri works with Medicare/Medicaid data—information about some of our most vulnerable populations—but can’t use AI to identify errors that could improve their care. Meanwhile, commercial entities are freely training AI on whatever data they can scrape. Therefore, the most sensitive and valuable healthcare data remains locked away while AI trains on potentially biased and unrepresentative information. Sushmita Macheri:  I work with healthcare, Medicare, and Medicaid data. I would like to upload the data so I can understand what errors I’m getting, but I’m unable to do that due to the restrictions we have at work. So, if I were able to upload one, let’s say, like a file that I am having errors with. Health Hats: So, what kind of errors, like missing data, what are the errors that you notice? Sushmita Macheri: I work with Tableau, mostly.  Sometimes, if I’m having issues with a calculated field, I would like to upload that calculated field or the logic behind it in the calculator to try to understand what the error is, but I’m unable to do so. For me, it’s the biggest challenge. Bias, Treating the Chart, Not the Patient Bob Stevens points out a harsh irony: AI makes decisions about patients while being trained on data that intentionally excludes patient perspectives. The people most affected by AI decisions had the least input in training the systems. It’s like having a medical advisory board that leaves out doctors and patients, then questioning why the recommendations fail. Bob Stevens: I am concerned about bias, as I mentioned, and that really worries me for two reasons. First, AI uses all available content, and as patients, we know that patient perspective content has not been well represented. Now, as AI starts making decisions based on this, all the content it has is just what’s available. It’s gathering it all. We haven’t been well represented in that process. So, it’s going to stay biased, right? Without patient information and the patient perspective, that creates a bias. Bob Stevens: The second type of bias is related to how it’s designed. It’s not being general because it’s a technology, while they’re asking for patient input. There’s also bias in the design process because of who is doing the designing. So, you have two levels. One can be considered intentional, but the other is the accumulation of all this data that is there. We’re not represented in and haven’t been represented in. And how do we change that? The incremental change in the AI dataset is expected to take decades. What bothers me is that we are now relying on AI to assign a label that can then trigger a response or action. Bob Stevens: That’s a high-risk moment, asking AI to make a decision that’s inherently high-risk. So what AI should always do is say. Here’s what I see. Now consider this when going in. And that brings us to the second part of a PCORnet study that I was involved in, which focused on the ER.  And we had our electronic health record, and depending on how certain things, it was called a natural language processing process. And it looked at all these different things, and then based on that, it said, look to this, or looked to that, or looked to the other.  It was those AI prompts that were based on the information from the electronic health record, which was then entered into the electronic health record. For that physician in the ER, they would then need to do certain things. Circular Dependence, Chasing Your Tail Rolanda Clark hits on something profound: we need expertise to verify AI, yet AI is supposed to democratize expertise. She notes you “still have to educate yourself on how to check the information,” but if you already have that expertise, why do you need AI? And if you don’t have the expertise, how can you verify it? It’s a circular dependency that reveals AI’s limitations rather than its strengths. Rolanda Clark: So, I’d say with AI, it’s not foolproof. You still have to educate yourself on how to verify the information that’s being presented, and that’s hard to do. Health Hats: I’ve started saying, ‘What is wrong with your algorithm?’ Correct. And I get some kind stuff I didn’t think about that makes me wanna burrow in more. Rolanda Clark: But I think that’s imperative. I think you must counter to mitigate this like b******t. Health Hats: Because you need to do that with experts anyway, because just because they’re experts in this little thing, they think they’re experts in way more. Rolanda Clark: Exactly. As a patient advocate, I ask myself, ‘Why am I here?’ And then I realize I have common sense, and I can see when it’s b******t. I definitely have value regardless. And you’ve had experiences that these organizations often don’t promote or share because they want to highlight all of the good. Health Hats: So, transparency? That’s an honorable challenge. How do you be tra

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5
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20 Ratings

About

Learning with people on the journey toward best health.

Information

  • Creator
    Danny van Leeuwen, Health Hats
  • Years Active
    2018 - 2026
  • Episodes
    98
  • Rating
    Explicit
  • Copyright
    ©Danny van Leeuwen Creative Commons
  • Show Website
    Health Hats, the Podcast

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