My first-ever post (2012) meets 100 life-sized elephants on Commonwealth Ave. Episode 625. I still haven’t found the whole animal. Click here to view the verbatim transcript Summary I revisit my first-ever blog post, a 2012 story about two strangers in wheelchairs, each certain the other had it worse, as I ride my wheelchair through The Great Elephant Migration’s 100 life-sized sculptures on Boston’s Commonwealth Avenue. Fourteen years and 625 episodes later, the argument holds: best health isn’t fixed, and no one, not the patient, not the organization, not me, ever gets the whole animal. Epis
Pathological optimism meets its cathartic downside. Listen to a 2-minute burst about what sucks in life as I ride my recumbent trike. It’s lame & heartfelt. Click here to view the printable newsletter. More readable than a transcript. Click here to view the verbatim transcript Summary Pathological optimism doesn’t mean things don’t suck. Sometimes you just need a 2-minute burst of complaining. I hate leaking misery in dribs and drabs. I let loose about my sax struggles, MS fatigue, too many pills, old-man prostate, and empty nesting. It’s ridiculous, it’s cathartic, and by the end, my annoyanc
Less, more frequently. Keeping my glorious subscribers up to date on some changes. Click here to view the printable newsletter. More readable than a transcript. Summary 600 blog posts and 250 podcast episodes in. I’m making a change. Production runs 50-60 hours per episode — unsustainable, even though I love every minute. In this trike-ride solo episode, I share what’s pulling my time: co-founding Trust My Own Health (a new startup, weekly one-screen newsletter ), co-leading an endometriosis series with Phee, and playing more baritone sax. The plan going forward: shorter, more frequent Health
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 ra
Using AI to track symptoms, weigh medication options, and advocate. Not a cure, a toolkit. An honest, careful path without handing over the wheel. Summary Health Hats reviewed Melissa Reynolds’ book on pregnancy in 2019, and they bonded over the fact that a man had blurbed it. Now she’s on to something new: she’s been figuring out how to use AI to manage a body that’s been hard to live in for two decades. The turning point came in a diagnostic unit, alone in the dark with no idea what would happen next. She opened Claude and asked what the odds were. The answer was enough to let her breathe. W
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 practic
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
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
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
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
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
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
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 writ
Letters beat emails for trustworthiness. A gullible skeptic reflects on navigating trust in a 50-year marriage, and the energy cost of distrust. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. 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
Ronda Alexander on strategies to build inclusive health coalitions, manage power dynamics, center marginalized voices, & design sustainable governance. Summary In this episode of Health Hats, host Danny van Leeuwen talks with Ronda Alexander, a community health advocate and skilled facilitator, about the challenges of building and maintaining effective health coalitions. Alexander shares her journey from attending Detroit's innovative Henry Ford Academy to working with Ford Partnership for Advanced Studies on workforce development, ultimately finding her calling at Vital Village Networks in Bo
Exploring bird flu prevention with farm owner Shannon Hayes. Discover boot washing, flock protection with coyotes, and best practices in biosecurity. Summary 🎯 The Lede: Bird flu cycles have shortened, forcing farmers like Shannon Hayes to reimagine their biosecurity protocols completely. Farm owner Shannon Hayes reveals how her family protects their livestock from bird flu at Sap Bush Hollow Farm. Key strategies include washing boots with soap and vinegar solutions, timing poultry purchases for summer months, ending public farm tours, and maintaining coyote populations as natural buffers aga
MS patient turned healthcare disruptor shares why your biggest "problem users" are actually your most valuable system improvers. Summary 🎯 The Lede: Collaborate with patients, caregivers, and clinician partners to develop tools that truly inform health decisions. From a reluctant keynote speaker who prefers hallway conversations comes wisdom about transforming healthcare through authentic partnership. At the American Nursing Informatics Association conference, Danny van Leeuwen shared how his MS diagnosis led to a revolutionary approach with his neurologist: "You don't know anything about mul
These families created a pandemic pod with clear rules & shared childcare. While adults navigated anxiety, their kids called it "the best time of their lives." Summary Bevin Croft and David Weintraub talk about their experience forming a "pod" during the COVID-19 pandemic. Health Hats introduces participatory governance - a concept I’ve studied throughout my life in various contexts, including families, communities, organizations, and healthcare. My history with governance spans from 1968, through college activism, homeschooling my children, living in an intentional community, and working in c
Who needs Spanish when you've got a saxophone? A music-lover proves that disability access is just another improvisation in Havana's jazz scene. Best viewed as a video https://youtu.be/Qz9Rm89LHD0 Summary Danny, Health Hats, chronicles his week-long trip to Cuba in January for a music-cultural exchange. Using a wheelchair and playing baritone saxophone, he traveled with a group of 11 from the States, organized by Dan Fox and Arlington MA's Morningside Studios. The group participated in a "Band Camp" hosted by the Havana Music School, receiving daily individual lessons, rehearsing in ensembles,
Data scientist Emily Hadley on navigating AI in healthcare, offering practical advice for maintaining patient agency amid algorithmic decision-making. Summary This interview with data scientist Emily Hadley examines the intersection of artificial intelligence and healthcare through a deeply personal lens. Hadley's journey began when her own health diagnosis coincided with her graduate studies in analytics, revealing how algorithm-driven systems often affect patient care—especially through insurance claim denials and clinical documentation. The conversation offers practical guidance for patient
A child of Holocaust survivors balances pathological optimism with apocalyptic thinking while seeking meaningful ways to channel advocacy in turbulent times. Summary In this deeply personal episode, a child of Holocaust survivors reflects on navigating today's global chaos while maintaining hope in healthcare. As a seasoned healthcare advocate, they share insights on: Leveraging privilege for positive change Finding balance between optimism and realism Adapting communication strategies for greater impact The importance of self-care and community support Key highlights: Moving from long-form mo
Successfully sharing & acting on research findings depends on active partnerships with the implementers – patients, caregivers, & their clinician partners. Summary Claude AI consulted to create this summary The 2024 Academy Health Dissemination & Implementation (D&I) Science Conference revealed a significant gap between researchers and implementers (patients, caregivers, and their clinician partners). While D&I science studies how to share and apply research findings effectively, the conference highlighted that implementers—the very people meant to use these findings—were largely absent. Throu
Demystify AI's evolution, from Netflix recommendations to ChatGPT, exploring how neural networks learn & why even AI creators can't fully explain how it works. Summary Claude AI used in this summary 🎙️ What the Heck is AI, Anyway? I sit down with tech expert Eric Pinaud to demystify artificial intelligence. Whether AI-curious or AI-anxious, this conversation breaks down complex concepts into digestible insights. We explore: • The evolution from Narrow AI (like Netflix recommendations) to today's Broad AI (like ChatGPT) • How AI learns through neural networks - similar to how we learn music or
Reflecting on community & self-care post-election. MS teaches patience. Adjusting media habits, finding strength in family history, music, & trusted connections. Summary Health Hats muses about physical, mental, and spiritual health, community connections, and self-care during these post-election times. He has changed his media consumption habits and is learning from his experiences with multiple sclerosis. He expresses anxiety and a dark curiosity about the future, drawing strength from family history, marriage, and music, and emphasizes the importance of staying connected with trusted commun
What kind of Artificial Intelligence does Health Hats, the Podcast, use in production? Understanding types of AI, transparency, and ethical considerations. Summary Perplexity used in this summary AI Tools in Use Various AI-powered software and apps are utilized in production, including Zoom, Descript, Grammarly, DaVinci Resolve, Canva, Perplexity, and OpenArt AI. Types of AI The episode breaks down different categories of AI, including Narrow AI, Artificial General Intelligence (AGI), and Artificial Superintelligence (ASI). AI functionalities are explained, from Reactive Machine AI to the theo
