Health Hats, the Podcast

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: Click here to view the printable newsletter. More readable than a transcript. Contents Table of Contents Toggle EpisodeProemPart 1: ICU Doors OpenPart 2: Seven Visits, No Questions AskedPart 3: The Right to Say GoodbyeSynthesis: What’s Common Across All ThreeReflection 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...

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 Table of Contents Toggle EpisodeProemNarrativeReflectionRelated episodes from Health Hats Please comment and ask questions: comment section at the bottom of the show noteson LinkedIn via emailYouTube channel InstagramTikTok to @healthhatsSubstackPatreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk Leon van Leeuwen: editing and site managementOscar van Leeuwen: video editingJulia Higgins: podcast production counselingClaudePerplexityAuphonicDescriptGrammarlyDaVinci 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...

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 Table of Contents Toggle EpisodeProemRedefining Athletic PerformanceNerd to AthleteCoachingCompetingCalculated RisksDiagnosis – FinallySwiss Cheese BrainHad It for Twenty-Five YearsWhen You Know One, You Know OneMovement RegimenBlessed with OptimismManaging HelpThe TeamSelective Decision-MakingAnd Then There’s MusicTraining to Travel with AbilitiesReading the RoomSuperpower and the 2-Minute BitchPushing Through?Scouting it OutHealth Hats, the PodcastBuild a TeamAggressive HelpLegacyReflection Please comment and ask questions: comment section at the bottom of the show noteson LinkedIn via emailYouTube channel InstagramTikTok to @healthhatsSubstackPatreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk Leon van Leeuwen: editing and site managementOscar van Leeuwen: video editingJulia Higgins: podcast production counselingClaudePerplexityAuphonicDescriptGrammarlyDaVinci 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...

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 Table of Contents Toggle EpisodeProemFrom Mom to AI50 Years of Love and Privilege RoastedRolling in CubaToo Many and Too Few HornsBest GovernanceGame-Changing StartupOnwardBest Health NowEndorphins and GratitudeRelated episodes from Health Hats Please comment and ask questions: comment section at the bottom of the show noteson LinkedIn via emailYouTube channel InstagramTikTok to @healthhatsSubstackPatreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk Leon van Leeuwen: editing and site managementOscar van Leeuwen: video editingJulia Higgins: podcast production counselingClaudeAuphonicDescriptGrammarlyDaVinciWhisper 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,...

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 Table of Contents Toggle EpisodeProem1. Introductions & Career Transitions2. The Catalyst: Why This Conversation Matters3. The Ideal State: Restoring Human Connection4. The Localization Opportunity5. Evidence + Story = Impact6. The Funder Issue: Who Is This Truly Benefiting?7. Dissemination, Implementation & Vested Interest8. Data Parties – The Concrete Solution9. No Strings Attached: Reimagining Funder Relationships10. Balancing Accountability and Flexibility11. Where the Money Actually Goes12. The Pendulum Swings13. The Three Relationships: Funder, Researcher, Community14. Maintaining Agency15. Listen and LearnReflectionRelated episodes from Health Hats 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...

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 Table of Contents Toggle EpisodeProemWhen Life Throws Your Kid a CurveballEmerging Adults MatterYour Medical Records Called—They’re Lost and SeparatedOne Size Fits All? Please!Spoiler: This Affects Way More People Than You’d ThinkCan We Teach Tech to Understand ‘It’s Complicated’?All-or-Nothing Privacy: The Sledgehammer ApproachMacGyver Solutions: When Your Software Says ‘No’The Secret Society of People Who Actually CareJuggling Your Mom’s Meds and Your Kids’ Forms: A Sandwich Generative NightmarePlaying Gatekeeper (Because We’re Scared You’ll Overshare)80% We Can Solve + 20% That’s a NightmareInformed Consent: What If People Actually Understood?Needles in a Haystack: Finding Your 100 People WorldwidePlot Twist: When It’s Your Data, Everything ChangesTraining Wheels for Privacy: Teaching People to ChooseThe New Job Nobody’s Hired Yet: Your Privacy ConciergeCan We Build This So My Oma Can Use It?Tech’s Outrunning Privacy (And We’re All Just Watching)ReflectionRelated episodes from Health Hats 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 ...

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 Table of Contents Toggle EpisodeProemParadox, Irony, Catch 22Burying the Treasure to Keep It SafeBias, Treating the Chart, Not the PatientCircular Dependence, Chasing Your TailIt Doesn’t Have to Make Sense.Throwing Out the Baby with the BathwaterClear as MudRedistricting to DemocratizeHumanize Through the Looking GlassDriving while looking into the Rearview MirrorA Million Interns Working for YouWhat Keeps Me Up at Night About AI?ReflectionRelated episodes from Health Hats 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.

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 Higgins: Digital 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 Podcast episode on YouTube Episode Dear Listener and Reader, I thought I’d start writing you letters. I miss letters. I send cards thanking my guests for their participation. People universally appreciate getting something via snail mail. But cards aren’t letters. They’re preformatted notes, where I just change the image and the name. For giggles, I looked back at my very first blog post, July 31, 2012. It was a paragraph, a letter of sorts, short and simple, Improv and Best Health. It's taking me longer to produce each episode. So, no more frequently than once a month. So, why not a letter, short and sweet, from time to time? Let’s start with trust. A letter feels more trustworthy than an email or a tweet. It’s signed; a person who writes a letter really wants to communicate and thinks about what they’re saying. So, perhaps, not a troll, more trustworthy. I always open letters. My immediate, momentary, default reaction to almost anything is trust. My kids say I’m gullible. My next instant reaction is skepticism. I think about what’s not true about whatever. ‘AI is the solution to everything.’ What do you mean, everything? What is AI anyway? Like that. I’ve been married for 50 years because at our core, my wife and I trust each other. We disagree, we misunderstand, we anger, I sulk. Yet we trust. On the other hand, I make stuff up. I misremember, create a story, and if it serves my purposes, stick with it or modify it as needed. My wife and grandkids are my fact-checkers. Still, we trust each other. In my personal life, trust isn’t an on-or-off switch, all or nothing. Well, not usually. It’s a matter of degree; it’s about something. I trust that I can count on you to be there for me, unless you can’t. I trust that you’ll return my call, unless you’re hurt, don’t feel like it, or missed it. Distrust sucks energy; be more careful with my words, self-censor, close my heart and mind. I don’t expect to trust everybody or everything. When I do trust, it’s priceless. Thanks for listening, I’ll be back. Related episodes from Health Hats https://health-hats.com/improv-and-health/ https://health-hats.com/pod113/ https://health-hats.com/trust-willing-to-be-vulnerable-worth-the-investment/ 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.

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 Boston, where she spent seven years supporting national coalitions focused on health equity and early childhood wellbeing. The conversation explores practical ways to manage power dynamics in cross-sector collaborations, from setting group norms that encourage real participation to designing decision-making processes that balance speed and sustainability. Alexander stresses the critical importance of listening to marginalized communities—those "furthest from opportunity"—and making sure they have real seats at decision-making tables, not just token representation. Key insights include strategies for inclusive facilitation, such as incorporating quiet reflection time, small group discussions, and developing shared talking points that coalition members can take back to their organizations. Alexander advocates for proactive governance planning, comparing effective coalition building to chess strategy, where groups think "seven to eight moves down the board" to prepare for inevitable challenges. The episode wraps up with Alexander's call to action for health advocates: start by listening to the communities you want to serve, trust what people tell you about their needs, and design systems that place those most affected by health inequities in leadership and decision-making roles. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemWhen did you first realize health was fragile?Vital Village NetworkLeadership, Impact, and MeasurementData StorytellingCommunity Research CollaborationFundingConvening, FacilitatingGetting Started at Henry Ford AcademyFord Partnership for Advanced StudiesTeaching Takes a VillageBack to DetroitPower DynamicsNorms: Don’t Be a JerkFirst, Take a Few SecondsGovernanceFast or Sustainable DecisionsWho are the Decision-makers?Coalition BuildingTalking PointsFirst, We ListenReflectionRelated episodes from Health Hats 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 managementresil 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, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips. Podcast episode on YouTube Inspired by and Grateful to: Jan Oldenburg, Ellen Schultz, Tomas Moran, Susannah Fox, Betsy Neptune, Tania Marien Links and references Ronda Alexander Henry Ford Academy Henry Ford Museum and Greenfield Village Ford Partnership for Advanced Studies Vital Village Network The Networks of Opportunity for Child Wellbeing Dr. Renee Boynton-Jarrett B’More for Healthy Babies Marginalization refers to the inequality certain individuals face in society due to power imbalances built into our systems. Episode Proem Learn with People on the Journey toward Best Health. That’s my tagline. Let’s break it down.

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 against wild waterfowl. Hayes emphasizes that bird flu prevention requires continuous practice and adaptation, not perfection. The episode highlights farmers' critical but often overlooked role in biosecurity and food supply protection during disease outbreaks Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemPodcast introIntroducing Shannon HayesBird Flu: Context and HistoryAn Ecosystem for BiosecurityProtocols for Biosecurity Call to actionChanging Protocols – Our BootsChanging Protocols – Chicks, Eggs, and ChickenDucks, Geese, Overflying BirdsTraining our CoyotesMore about Shoes and BootsGap Found at a Farm MeetingPractice, Not PerfectReflectionPodcast OutroRelated episodes from Health Hats 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 managementresil 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, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips. Podcast episode on YouTube Inspired by and Grateful to Sue and Jay Spivack, Jim Donahue, Pat Hultz Links and references Sap Bush Hollow Farm The Hearth of Sap Bush Hollow Podcast & The Radical Homemaker Blog “Drawing on the Right Side of the Brain” by Betty Edwards, 'Your Local Epidemiologist' Substack by Katelyn Jetelina and Edward Nirenberg New York State Grown and Certified Episode Proem The only time I felt I could draw was when my Oma was dying. I sketched the outside of her. I had recently read “Drawing on the Right Side of the Brain” by Betty Edwards, which revolutionized art instruction by teaching readers to perceive edges, spaces, and relationships—core skills for realistic drawing. It features exercises in contour and blind contour drawing, emphasizing the importance of drawing what you actually see, not what you think you see. Now, when I’m curious, I want to know the backstory to fill out the edges. My antennae stirred when reading 'Your Local Epidemiologist' about Bird Flu. The Paramedic and Emergency Nurse personas in me feel anxious. No reports are coming out of the CDC, the aggregation of State infection data has been discontinued, and the administration is comfortable with days-long reaction times to disasters, having defunded and staffed mitigation work. So, look out farther to the edges of bird flu –the front line of people managing flocks of birds. Bird flu is nothing new, but the usual 10- to 15-year interval between epidemics has changed. Bird flu isn’t dying out or going dormant anymore. The CDC is reporting incidents of infection jumping from birds to people. Our federal government seems unprepared - danger, danger, danger. I know so little, and I’m scared. Not a healthy mix. Podcast intro Welcome to Health Hats, the Podcast.

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 multiple sclerosis, but I don't know anything about you." Key Insights: Healthcare hackers aren't criminals—they're your most dedicated users finding creative workarounds Collaboration is about power dynamics; the more you hoard power, the less you can truly partner Everyone needs to be at the table: patients, caregivers, AND clinicians Aim for a .300 batting average—failing more than succeeding, but keep swinging The secret sauce? Bobbleheads on his desk representing different audience personas, grandsons who told him to stop burying the lede, and the understanding that making healthcare decisions is like renovating a kitchen—endless choices requiring trusted partners. Ready to take one more step in collaboration? Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProem: A Reluctant Keynote Speaker’s ConfessionGrandkid WisdomLead with the LedePodcast introPrepare for ActionStart with Self-KnowledgeMS Detective: Dr. SherlockActivists, DisruptorsThe Bottom LineHealth and Care Decisions, Like Kitchen RenovationBobbleheads of InformaticistsIn Defense of Healthcare Hackers, the Good KindMy HacksCall to actionInevitable Disruption, PearlsCat Herding 101: Without Losing Your MindCollaboration: Sharing Your ToysHouse Cleaning before ReorganizingPartnership from the Ground UpThe Power Dynamics Tango: Who’s Leading This Dance?Foundational ExpectationsCapacityThe .300 Batting Average PhilosophyCulture, Listening, Sharing PowerNext StepsReflectionPodcast OutroRelated episodes from Health Hats 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 You know who you are. I'm grateful. Podcast episode on YouTube Inspired by and Grateful to Mark Heyward Johnson, Kristina Moran, Leon and Oscar van Leeuwen, Michael Chaffin, Josef Chlachula, Tom Trainer, Pegret Harrison, Fred Gutierrez, Jeff Horner, CA Stockwell, Wendy Coad, Bob Lecher Links and references American Nursing Informatics Association Susannah Fox Episode Proem: A Reluctant Keynote Speaker’s Confession A confession: I'm a keynote speaker who’s ambivalent about keynote speeches. Give me the hallway conversations, the poster sessions, and the coffee-break connections—that's where my unexpected learning happens. But when my friend and podcast guest, Mark Hayward Johnson, invited me to speak at the American Nursing Informatics Association conference in New Orleans, I faced a delicious challenge: how do you transform a formal presentation into the kind of authentic exchange that changes how people approach their work? Grandkid Wisdom The answer, it turns out, lies in the space between listening and action—and in the wisdom of my two teenage grandsons, who advised me to stop burying the lede and use fewer words on my slides, along with my international colleagues who offered expertise in honing audience engagement through storytelling and keeping the focus on the ask. Lead with the Lede The conference took place at the end of March. I received the full professional multimedia recording of the presentation in mid-May,

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 corporate settings. The main segment features a conversation with Bevin and David, who formed a COVID-19 support group, or pod, with other families to help one another during the pandemic. They discuss: They spontaneously decided to form the pod in May 2020 Creating formal rules and a written agreement to manage risks and expectations The challenges of prioritizing the pod over extended family relationships The practical arrangements include shared meals, childcare, and rotating responsibilities Their collective approach to virtual schooling for their children The difficulties David experienced as a teacher during hybrid learning How their children viewed the pod experience as "the best time of their lives" despite adults' pandemic anxiety The lasting bonds their "family of friends" developed and maintained The pod used tools from Bevin's work in person-centered practices to create its governance structure. They made decisions based on consensus, with particular attention to accommodate the most cautious member's concerns. Their experience strengthened existing friendships and created lasting bonds between the families. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemPodcast introMy Life with Participatory GovernanceForming a PodRulesNot easyPrioritiesRules, Contract, RisksTools for AgreementAccountabilityHow are You Different?MealsChildcareTraveling TogetherSchool and WorkingTough Times as a TeacherKids Loved ItBelated Introductions Call to actionReflectionPodcast OutroRelated episodes from Health Hats 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 You know who you are. I'm grateful. Podcast episode on YouTube Inspired by and Grateful to Jan Oldenburg, Nakela Cook, Russ Howerton Links and references World Health Network National Center on Advancing Person-Centered Practices and Systems Episode Proem My advocacy revolves around participatory governance in everything that contributes to a decent quality of life. Participatory governance entails broad involvement, accessible information, transparency, and accountability, leading to trust in decision-making. I’m a lifelong student of governance, having studied it in families, communities, teams, organizations, healthcare, research, and various other settings. Podcast intro Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this. My Life with Participatory Governance I’ve watched and participated in governance since 1968, when I was 16, dealing with the Vietnam War draft. I learned that the plumbing of the draft contained laws, written regulations, and unwritten rules, with people making decisions, people moving paper, and massive numbers of kids like me processing through. I wanted to prepare myself,

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, and performing Cuban music at a restaurant. Despite Danny's initial anxieties about traveling with his disability and instrument, he found Cubans accommodating and helpful. The podcast features an interview with Claudia Fumero, manager of the Havana Music School, who discusses: The school's focus on teaching Cuban music to foreign visitors How the business began and evolved from connecting students with teachers in their homes to having a dedicated facility Her dream of expanding with more instruments and creating a small café where people can play music The episode is interspersed with musical performances by the ensembles, including renditions of "Sofrito" and "Afro Blue" by Mongo Santamaria. The group also attended the Havana Jazz Festival each night during their stay. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle ProemPodcast introBlending Language and CultureHavana Music SchoolHavana Music School – Morningside Studios ConnectionManaging the BusinessManaging the StayEmployer of Musicians Call to actionDreamsTraveling with DisabilitiesWhy Cuba?More MusicReflectionPodcast OutroRelated episodes from Health Hats 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 You know who you are. I'm thankful. Inspired by and Grateful to Dan, Peter, Ann, Sonja, Jeff, Deb, Bob, Richard, Pachy, Claudia, Gisselle, Miguel, Alejandro, Mauri, Leo, Adrian, Angelito, Lazaro Links and references Morningside Studios Morningside Studio Tours Havana Music School on Instagram The Second Ensemble performance featuring Jeff Stout, Deb Larkin, Bob Salitsky, and Dan Fox Havana Jazz Festival 2025 Sofrito by Mongo Santamaria Mambo Inn by Mario Bauza Afro Blue by Mongo Santamaria Lagrimas Negras by Miguel Matamoros Guantanamera by Jose Marti/JoesitoFernandez Proem Music is a world within itself, with a language we all understand. — Stevie Wonder. My nighttime voices bombarded me. How can you go to Cuba as a musician? You’re not good enough. Your wheelchair won’t make it over their crumbling roads and sidewalks. Your horn is too big and heavy with everything else. You can’t do too many stairs. You don’t speak Spanish. You won’t be safe. I hate those deflating voices. I should be excited about this chance of a lifetime. I completely trust Dan Fox, our guide and arranger. My disabilities do not define me. Helpful people are everywhere. I’m going with my partner of fifty years. We love music and culture. Who cares about politics? What the heck? We went. Welcome to the story of our adventures. Podcast intro Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this. Blending Language and Culture Music alone can abolish differences of language or culture between two people and invoke something indestructible within t...

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 patients navigating AI-influenced healthcare, including reviewing AI-generated clinical notes for accuracy, challenging algorithmic insurance decisions, and insisting on human intervention when automated systems fail. Hadley advocates for preserving patient agency and rights within increasingly automated systems while highlighting how algorithm review boards are striving to provide governance in this largely unregulated space. The interview concludes with resources for staying informed about developments in healthcare AI, emphasizing that while AI tools are rapidly advancing, patient advocacy remains vital. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemA Data Scientist AwakesBuilding Guardrails with AI GovernanceHallucinations and Validation with AI in ResearchPrompt Engineering-Conversational AIVerification and VigilanceStaying InformedReflectionRelated episodes from Health Hats 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 You know who you are. I'm grateful. Podcast episode on YouTube No video Inspired by and Grateful to Eric Pinaud, Laura Marcia, Amy Price, Dave deBronkart, Links and references Prompt Engineering Algorithm Review Boards at RTI Dave deBronkart's Patient's Use AI Episode Proem This year, I switched from Medicare Advantage to Traditional Medicare. I still needed to purchase a supplemental commercial plan to cover what Medicare Part B didn’t. However, the supplemental commercial plan denied some services the previous Medicare Advantage plan covered. Why? What algorithms did each plan use to determine coverage? How can I manage this? Welcome to the third installment of Artificial Intelligence Can Work for You. We’ve explored how I use AI in my podcast productions and delved into some AI basics with Info-Tech leader Eric Pinaud. I asked Emily Hadley, a data scientist at RTI specializing in AI algorithms for insurance coverage decisions, to join us. Early in her graduate studies, Emily was diagnosed with Crohn’s disease. This led to her interest in studying insurance algorithms. A Data Scientist Awakes Health Hats: How did you gain expertise in AI? Emily Hadley: Great question. I was diagnosed right as I started a graduate program in analytics. In my undergraduate studies, I studied statistics in public policy. I liked the idea of using data to shape how policymakers make decisions, especially in the US. I had done some work with AmeriCorps and then went to grad school to really hone those skills. Being diagnosed at the same time that I was in grad school meant that I was navigating to new, informative, and educational areas. And I think that that's when I really came to realize the power of data and the power of AI in shaping the way that organizations and people make decisions. We live in a really algorithm-fueled society. We constantly encounter technology and AI systems, even when we don't realize it. An example I give is that I've faced many problems getting insurance to cover the things it is supposed to. I didn't realize until a couple of years ago that this is ...

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 monthly interviews to shorter, more frequent content The role of music as a healing force Following Helene Epstein's "Patient No More" insights Special music feature: "The Weight" by The Band with Ringo Starr and Robbie Robertson 🔗 Featured on Health Hats Podcast 📧 Connect: dannyhealthhats@gmail.com 🌐 More resources: https://linktr.ee/healthhats Join us in exploring how health, love, power, and agency work together as we navigate these challenging times. Subscribe for more insights on healthcare advocacy and personal growth! #HealthcareAdvocacy #PatientVoice #Healthcare #Podcast #SelfCare #CommunitySupport 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 You know who you are. I'm grateful. Podcast episode on YouTube Inspired by and Grateful to All of you Links and references Helene Epstein's Patient No More Chapter 2: The Very First Thing You Should Do, Today Episode Proem Greetings, I’m trying to make sense of the chaos and disruption all around the U.S. and the world. I struggle to focus and direct my energies. I doom scroll, fret, and get mad at myself. As a child of holocaust survivors, my pathological optimism collides with my apocalyptic thinking. I’m afraid for our safety, health, and care. We need teams, organization, trust, and protection more than ever. Leverage Privilege Coming home from Ann and my inspiring trip to Cuba, I feel overwhelmed by our privilege. We live below our means and have no dependents. Our mortgage is paid off, and we’re in love. I have all the toys I need. I can take calculated risks. I don’t need a black market - yet. I’m seasoned, connected, and as healthy as I can be. My superpower is accepting what is and adapting. I have a platform and understand the infrastructure needed to support action promoting best health and care, whether adapting or resisting. How I miss Mighty Casey Quinlan! Rebels in Health My friends and colleagues, our work must continue—whatever we can manage minute to minute. We know many people and are skilled at what we do. Susannah Fox says in Rebels in Health that we are seekers, networkers, solvers, champions, and communicators (my add). That's the mix of Rebels in Health we need right now. Navigate I’m oriented to action. What action? Where and how should I increase my presence? Where do my peeps share information - Substack, LinkedIn, YouTube shorts, Instagram, TikTok, Medium, Patreon, BlueSky? Yikes! I’m connected to a network of podcasters. How can we leverage and channel our voices? I can and will assist rebels and champions when and where I find them. I’m staying in the health and care space. It’s what I know and where most of my hats are. Health, love, power, and agency fit together – hand in glove. Adapt How can I adjust my practice patterns and focus during this chaotic time? I will reduce my long-form work—monthly 30–60-minute interviews with time-consuming multimedia tentacles—to shorter form, more often, to enable more time for listening and caring. Self-care rules. Music,

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. Through interviews with attendees, key barriers emerged: high conference costs, lack of deliberate outreach, and content primarily designed for researchers. A compelling example from Ghana demonstrated successful implementation through radio drama and community health workers, suggesting that effective D&I requires meeting people where they are, both literally and figuratively. Click here to view the printable newsletter with images. It is more readable than the transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemShare and Use: Dissemination and Implementation2024 Academy Health D&I ConferenceAccording to Scientists, What is D&I?Setup and IntroductionsNGOs using Implementation ScienceNothing about us without usNGOs implement every dayUnderstanding the caregiver’s experienceResearch questions from implementersAlign the languageFacilitating implementationWhat is Dissemination and Implementation Science?Implementers at the conferenceMore intentional invitationsPartnering with PharmaPaying for implementers to attendExperts don’t have all the answersCost and timeRadical dissemination by radioTen + ten + thirtyReflectionRelated episodes from Health Hats 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, Twitter, TikTok to @healthhats Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk Leon van Leeuwen: article-grade transcript editing Oscar van Leeuwen: video editing Julia Higgins: Digital 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, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips. Podcast episodes on YouTube from Audio Podcast Inspired by and Grateful to Anonymous, Bernard Appiah, Bryan Ford, Catherine Hoyt, Nadia Sam-Agudu, Tatiana Nickelson, Greg Martin, Kristen Carmen, Aaron Carroll, Susannah Fox, Eric Kettering, Rodney Elliott, Lisa Stewart, Ellen Schultz, Kathleen Noonan Links and references The Communication Initiative Network Bernard Appiah Bernard Appiah's publications Fascinating!! Nadia Sam-Agudu recent publication. Check this out. St. Louis Sickle Cell Association University of Colorado Accord Center. See Infographic here. Communication and Dissemination Strategies To Facilitate the Use of Health and Health Care Evidence Dissemination and Implementation Science to Advance Health Equity: An Imperative for Systemic Change Managing Clinical Knowledge for Health Care Improvement Embedding implementation science in the research pipeline A Systematic Review of Patient Engagement and Its Organizational Impact The Application and Evolution of the Practical, Robust Implementation and Sustainability Model (PRISM): History and Innovations Engagement in Research: PCORI's Foundational Expectations for Partnerships | PCORI Toolkit resources | Consumer Engagement | VCCC Alliance Building the table together: Lessons on authentic community engagement from INSPIRE Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care – Susan...

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 new skills • Why even AI's creators can't fully explain how it works • The environmental cost: ChatGPT's daily operations cost $700k and use massive energy Most importantly, we discuss how AI is becoming more accessible - anyone can ask questions and get answers, regardless of technical expertise. Though powerful, AI still needs human wisdom and judgment to be truly useful. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemIntelligenceIs AI Understandable?What is AI?Narrow AI – One prediction, one decisionBroad AI – Natural LanguageAGI, Artificial General Intelligence – Creating Something NewAI ExamplesFace IDOverwhelmed?ChatGPTHallucinationsReinforcement TrainingStock Market CrazinessHow is Generative AI different from Regular AI?Deep Neural NetworksLearning in HarmonyControllable, Explicable, and PredictableNobody KnowsPrompt = QuestionModeled on the BrainStructured DataUnstructured DataBiasesTime saverScope, Context, and BobbleheadsExperimentingSustainabilityNetworking to Solve a ProblemAGI Artificial General Intelligence – Approaching HumanPeople Solving a Problem, Asking a QuestionAny languageChecking for PlagiarismPerplexityManaging a Large Medical RecordReflectionRelated episodes from Health Hats 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, Twitter, TikTok to @healthhats Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk Leon van Leeuwen: article-grade transcript editing Oscar van Leeuwen: video editing Julia Higgins: Digital 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, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips. Podcast episodes on YouTube from Podcast. When Comic Books Predict Tech Better Than Scientists Billions of Data Points Walk Into a Neural Bar... Inspired by and Grateful to John Marks, Amy Price, Dave deBronkart, Emily Hadley, James Cummings, Jeff Harrington, Jacob Sloane, Links and references Chester Gould introduced Dick Tracy's 2-way wrist radio Claude 3.5 Sonnet The first notable AI development in the 1950s Episode Proem Greetings. Welcome to the second episode in Health Hats’ occasional series, Artificial Intelligence Can Work for You. The first episode, AI: Neither Artificial nor Intelligent, demonstrated how I use artificial intelligence to make my multimedia DIY (Do It Yourself) sausage. A long-time reader, John, called to tell me he opens all my podcast notifications and emails yet never listens to anything smelling technical. But he opened this one, and for the first time, he had an inkling of what AI might be. Mission accomplished! Let's take another step and use our senses to picture this animal, Artificial Intelligence. How much can we recognize? What feels like sci-fi? What smells like BS? How much is inconceivable? Think of cell phone inventor Alan Gross, who conceived of the cell phone after comic strip c...

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 communities and being open to help when needed. 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: article-grade transcript editing Oscar van Leeuwen: video editing Julia Higgins: Digital 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, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips. Podcast episodes on YouTube from Podcast Inspired by and Grateful to Steve and Sue Heatherington, Heidi Frei, Matt Neil, Tania Marien, Ann Boland, Leon van Leeuwen Links and references Heather Cox Richardson's Letters from an American on Substack Weekly Show with Jon Stewart Kareem Abdul-Jabbar on Substack Virginia Heffernan's Magic+Loss on Substack the Bulwark Katelyn Jetelina's Your Local Epidemiologist on Substack Lyz's Men Yell at Me on Substack the Guardian Sue Heatherington's fresh sight from the quiet edge. Episode Let’s review the body from head to toe: tedious brain loop, dry, sticky mouth, queasy stomach, tight muscles, loose bowels, and bone fatigue. Fear, anxiety, despair, and hopelessness, with a niggling curiosity. I'm networking and reaching out to loved ones in person and virtually. Searching for facts, trust, and people to follow. I've stopped almost all pundits in print, audio, and video. My feeds are changing with more music, comedy, animals, and sports. And algebra—why algebra? I'm sticking with following Heather Cox Richardson, Jon Stewart, Kareem Abdul-Jabbar, Virginia Heffernan, the Bulwark, Your Local Epidemiologist, Men Yell at Me, the Guardian, and Sue Heatherington's fresh sight from the quiet edge. I've added AOC, Jeff Jackson, and Isaac Saul's Tangle. More music: My Latin Band, Lechuga Fresca, is on hiatus, so I joined a Dixieland Band. I'm still losing weight—30 pounds so far. I just noticed less abdominal flab to pinch when taking my shots. I can do 20 push-ups and 16 squats and can get myself up off the floor. I walk about 3,500 steps a day. I'm getting a new travel wheelchair. I have several priorities: don't fall, progress with MS as slowly as possible, maintain much of my pathological optimism, continue to play my horn, and contribute to inclusive, nurturing communities. The hardest priority may be maintaining optimism. MS has forced me to exercise my patience muscles. What choice do I have? I can't run to the bus. If I miss it, I miss it. What muscles will we strengthen over the next four years? I'm a terrible crystal ball gazer, but I know the self-care muscles will need attention. At this moment, I don't feel the urge to do much of anything except take care of myself and those with whom I'm fortunate enough to share an existence. When a plan comes to me, I'll share it. If someone else comes up with a plan, I'll check out the someone and the plan with others I ...

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 theoretical Self-Aware AI. Ethical Considerations Transparency and disclosure of AI usage in content creation Maintaining authenticity and human creativity Ensuring content accuracy and preventing misinformation Addressing bias and fairness in AI algorithms Protecting user privacy and data Ensuring Transparency Disclosing AI usage in audio content and metadata Clear communication with the audience about AI utilization Appropriate use of AI as a tool to enhance, not replace, human creativity Verifying and fact-checking AI-generated content The episode emphasizes the importance of using AI responsibly to enhance the podcasting experience while maintaining integrity, authenticity, and trust with the audience. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemAI used in Health Hats ProductionAI in Podcast Production According to Health HatsAI in Content Creation and EditingAudio ProcessingVideo EditingAI for Content EnhancementTranscription and SubtitlingContent GenerationAI for Audience Engagement and AnalyticsPersonalizationAnalytics and InsightsTypes of AI Based on CapabilitiesNarrow AI (Weak AI)Artificial General Intelligence (AGI)Artificial Superintelligence (ASI)Types of AI Based on FunctionalityReactive Machine AILimited Memory AITheory of Mind AISelf-Aware AIAI Ethical ConsiderationsTransparency and DisclosureMaintaining AuthenticityContent Accuracy and MisinformationBias and FairnessPrivacy and Data ProtectionJob Displacement ConcernsClimate and Resource ImpactTransparencyDisclosure RequirementsClear CommunicationAppropriate AI UsageContent VerificationOngoing EvaluationTransparency: AI Notice in Health Hats, the Podcast Show NotesAI Notice for Health Hats, the PodcastReflectionRelated episodes from Health Hats 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, Twitter, TikTok to @healthhats Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk Leon van Leeuwen: article-grade transcript editing Oscar van Leeuwen: video editing Julia Higgins: Digital 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, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips. Podcast episodes on YouTube from Podcast. Inspired by and Grateful to Amy Price, Fred Trotter, Dave deBronkart, Eric Pinaud, Emily Hadley, Laura Marcial, James Cummings, Ken Goodman Links and references https://conversational-leadership.net/quotation/ai-is-neither-artificial-not-intelligent/ AI in Podcasting: Transforming Podcast with AI Technology Best AI tools for podcasts AI in Podcasting: A Guide for Brand Marketers https://www.carmatec.com/blog/ai-in-media-and-entertainment-complete-guide/ AI in Media and Entertainment Complete Guide Episode Proem No surprise, I use Artificial Intelligence in my podcast production. As an early adopter of technology,

Effective solutions & ethical guardrails for data-driven decision-making, care, & treatment require patient involvement in policy & technology development. Summary Patient Insights on Health Access, Technology, and Public Policy Data should inform decision-making for a triad of patients, caregivers, and clinician partners. Some patients desire data sovereignty - the ability to access, use, and share their health data. However, managing personal health data can be overwhelming for individuals. Transparency about data usage and privacy is crucial for building trust. There are concerns about potential stigma and discrimination from data misuse. Including patients in policy and technology development can lead to more effective solutions. Ethical guardrails are needed, particularly for data aggregation and monetization by companies. There's a mix of optimism and pessimism about the future of health data management. Collaboration with patients in development processes can increase the likelihood of successful outcomes. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemPodcast introLevel set – Get Your Patient On90% Similar, 100% HumanInspiration from Data: Weak Link in our HealthRelationship Triad for Decision-Making: Patient, Caregiver, Clinician PartnerUnintended Consequences – Crystal Ball GazingData Sovereignty – Self-GovernanceFederated Model of Data (Confederacy of Confederacies)Call to actionTrust Communities – Relaxed ControlTransparency – Knowing What You Don’t KnowAnonymous Data. Really?Guardrails – Safety and PrivacyStigma and DiscriminationPessimism or Optimism About the FutureReflectionData and Decision-MakingData Sovereignty and ManagementEthical ConsiderationsPolicy and Technology DevelopmentOutlookPodcast Outro 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, Twitter, TikTok to @healthhats Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk Leon van Leeuwen: article-grade transcript editing Oscar van Leeuwen: video editing Julia Higgins: Digital 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, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips. Podcast episodes on YouTube from Podcast. Inspired by and Grateful to Kistein Monkhouse, Claire Sachs, Christine Von Raesfeld, Geri Lynn Baumblatt, Aaron Carroll, Erin Holve, Adam Thompson, Kathleen Noonan, Andrea Downing Links and references The Panel Kistein Monkhouse, the moderator, founded Patient Orators. My peeps are Christine Von Raesfeld, founder of People with Empathy and with the Light Collective, and Claire Sachs, founder of the Patient Advocate Chronicles and TPAC Consulting. A federated data model for patient data PCORnet is a prime example of a federated data system. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8596061/ Episode Proem Kistein Monkhouse invited me to participate in a 30-minute panel at September’s Academy Health’s Datapalooza conference titled ‘Patient Insights on Health Access, Technology, and Public Policy.’ I thought, ‘OMG, this thesis-worthy topic can’t be addressed in 30 minutes.’ However, the opportunity begged to be embraced, especially with the citizen expert panel members: Kistein Monkhouse, the moderator, founded Patient Orators. My peeps are Christine Von Raesfeld, founder of People with Empathy and with the Light Collective, and Claire Sachs, founder of the Patient Advocate Chronicles and TPAC Consulting.