Health Hats, the Podcast

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.

Philip Shadle, CEO, Aimee Copeland Foundation opens outdoor accessibility for disabled individuals with all-terrain wheelchairs. My endorphins flow. Yeehaw! Summary This podcast episode features an interview with Philip Shadle, CEO of the Aimee Copeland Foundation, discussing the transformative impact of all-terrain wheelchairs on accessibility and outdoor experiences for individuals with disabilities. The podcast underscores the importance of accessibility and inclusion in outdoor activities, celebrating the collaborative efforts of organizations, individuals, and communities to enhance the lives of people with disabilities. 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 introOff-road wheelchair travelIntroducing Philip ShadleTravel in Costa RicaFoundation Business ModelAll-Terrain Wheelchair Models Call to actionTraining for Off-Road TravelBirthing the FoundationExpanding the Foundation OfferingsGratefulContestReflectionPodcast 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 Ann Boland, Bruce Kimmel, Olivia Zivney, Linda DeRosa, and all my many helpers Links and references Camino de Santiago pilgrimages, Costa Rica Aimee Copeland Foundation Action Track Chair in different sizes. Episode Proem According to the CDC A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions). Clearly, it's not a legal definition. I would add self-image, societal perceptions, and environment as components of that definition. Some days, I feel more disabled than other days, and some situations enhance or reduce my abilities. Ability/Disability is a continuum that changes over time and situation. Travel accentuates my abilities - puts them in high relief - for me. Travel requires close examination of my abilities so I can figure out how to manage minute-to-minute - constant decision-making. Travel allows me to stretch my capabilities. It’s exhilarating and eventually exhausting. Periodically, I share my travel experiences. Remember the two Camino de Santiago pilgrimages, one in 2019 and the other 2022? In 2023 we explored Costa Rica. We’re planning a music trip to Cuba in four months. Today, I describe our trip to Cloudland Canyon State Park in northwest Georgia. After a zip-lining accident in 2012, when she was 24, Aimee Copeland was hospitalized and diagnosed with a flesh-eating, bacterial infection. They had to amputate both of her hands, right foot, and entire left leg. Before the infection, she was extremely active, rock climbing, backpacking, and trail running. In response to her frustration with wheelchair life, she created the Aimee Copeland Foundation, which raises funds to create opportunities for connecting with the self, the community, and the earth through the provision of a fleet of all-terrain wheelchairs for free use by people with disabilities within select Georgia state parks. In this podcast episode,

Aaron Carroll, CEO of Academy Health, discusses his journey to improve health systems & decision making through community engagement & repetitive communication. Summary Aaron Carroll, CEO of Academy Health, shares his journey, from his frustrations with the healthcare system as a pediatrician, and the role of mentorship and science communication in his career. He delves into his efforts to make complex health issues understandable to diverse audiences through various media, his role in improving health care decision making and systems, involving communities in research, and building trust through consistent and repetitive science communication. Dr. Carroll also touches on the importance of implementation science and the challenges of making research findings effective in real-world settings. 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 Aaron CarrollHealth is FragileWriting a Prescription Isn’t EnoughFix itPhase one: Independent InvestigatorPhase Next: Mentor, Communicator, ResponderAcademy HealthCommunicating Science to the Public Where They AreThe Practice of Communicating for ImpactEngaging Lived ExperiencePatients Included at Academy Health Call to actionKey PointsLived Experience at the Table – Your Lived ExperienceResearch SkepticismLearning When the Hypothesis isn’t ProvenImplementation ScienceEfficacy and EffectivenessTrust and ListeningRepetition, Repetition, RepetitionReflectionPodcast 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 Seth Godin, Nakela Cook, Ann Boland, Ellen Schultz, Steve Heatherington Links and references Aaron Carrol: The Incidental Economist, Healthcare Triage, Robert Wood Johnson Clinical Scholar, New York Times, Indiana University's COVID response. Academy Health: Academyhealth.org/Datapalooza, Communicating for Impact, community-led research grants, Health Data Leadership Institute, Dissemination Implementation Science Conference patient-included criteria implementation science Episode Proem Danny and Ann, July 3, 2024 Together for more than fifty years, my wife and I still practice communication - practice as in repetition, experimentation, and humility with two steps forward and one step back (or one forward and two back). No wonder anyone participating in healthcare continually struggles with the puzzle of communication. Just today, I texted a pharmacy about access to a critical medication with an expired prescription, tried to explain my newly diagnosed diabetes and diet choices on FaceTime with a friend, and drafted a letter about lessons learned about measurement for team members to share with our leaders. I know some master communicators: Seth Godin, Nakela Cook, my wife, Ellen Schultz, Steve Heatherington, and my guest today, Dr. Aaron Carroll, President and CEO of Academy Health. They each excel in different ways under different circumstances. I must take care to keep listening to their content and not float above and marvel at their artistry and skill. DALL·E 2024-07-24 09.19.39 - A scene depicting various master communicators, each in their element.

Family and friends dispersed Mighty Casey (Mary) Quinlan’s ashes in the Gulfstream, reflecting on her life and sharing outrageous and mundane pics and stories. Summary On May 24, 2024, Mighty Casey Quinlan's ashes were spread in the Gulfstream of the Atlantic Ocean near Stuart, Florida. This episode captures the layers of that experience, featuring an introduction conversation between Jan Oldenburg and Health Hats, recorded on June 27. The episode includes self-introductions of the dispersal party, a historical photo tour of Casey's life, and a reflection from Hank Burchard. The package of audiovisual pieces including a 17-minute video with introductions and a three-minute photo tour by Casey’s sister, CeCe can be found in the show notes. Coming soon, Casey's website, mightycasey.com, will include all her podcasts and the contents of six VHS and one Beta tape recorded over the years. Check our progress. These show notes DO NOT include images. Images are key to this episode. Click here to view the printable newsletter with images. Contents Table of Contents Toggle CreditsEpisodeProemPodcast introThere’s Something Happening HereHow I Met CaseyCall to actionPhoto Tour with Historian, CeCe CaseyJan and Danny sign offReflection from HankPodcast OutroCreative Commons Licensing 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: 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 episodes on YouTube from Podcast. Inspired by and Grateful to Jan Oldenburg, CeCe Casey, Michael Casey, Myrna Isaacs, Piper Dankworth, Laurie Rodgers Stukel, Hank Burchard, Dave DeBronkhart, Amy Price Links and references Casey's Website Health Hats Podcasts with and about Casey Credits Music behind photos scraped from YoYo Ma on Fresh Air Images of Casey throught taken by family and friends over the years Episode This transcript DOES NOT include images. Images are key to this episode. Click here to view the printable newsletter with images. Proem Health Hats: On May 24th, 2024, we spread Casey’s ashes in the Gulfstream of the Atlantic Ocean near Stuart, Florida. This episode layers several of the many pieces of that experience. I stopped here because I’d had enough. Time to publish! You’ll find an intro conversation between Jan Oldenburg and me recorded on June 27th, followed by self-introductions of the dispersal party, recorded by our guide, Karen Hallett. Next, we’ll take a historical photo tour of Casey’s life, piloted by Casey’s sister, CeCe. I only included about fifteen of the almost one hundred photos, as the resulting three-minute clip took almost twenty hours to produce. We’ll end with me reading Hank Burchard’s post-event reflection, and then Jan and I will wrap it up. The written and audio include everything except the videos, of course. I will create a 17-minute video with the introductions and a three-minute one with the photo tour. I’m resurrecting Casey’s website to include all her podcasts and the contents of six VHS and one Beta tape Casey recorded over the years. The URL will be Casey’s https://mightycasey.com. Try it to see if we’ve got it ready. 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.

Shana Davidson shares her day-to-day Long Covid challenges using the "spoon theory," a metaphor for the limited energy reserves people with chronic illness face Summary The episode explores the fascination with prolific enigmatic conditions, which are common yet complex and often misunderstood illnesses like fibromyalgia, chronic fatigue syndrome, lupus, endometriosis, and long covid. These conditions highlight systemic issues in healthcare, such as various biases and the complexities of corporate medicine and research. Shana Davidson, having personally experienced misdiagnosis and the challenges of navigating these conditions, emphasizes the intersectional barriers faced by women, people of color, and those with mental and spiritual health challenges. Shana shares her journey with long covid, discussing the day-to-day management challenges using the "spoon theory," a metaphor for the limited energy reserves people with chronic illness face. Shana's experience underscores the difficulties in obtaining a diagnosis and appropriate care, reflecting broader issues in the medical system's handling of chronic conditions. Throughout, the podcast touches on themes of resilience, the need for advocacy, and the struggle for recognition and adequate research in treating long covid and similar conditions. The conversation also highlights the importance of compassion and understanding within the medical community and society towards those living with chronic illnesses. 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 introLearning health is fragileSpoons, SpooniesPace Yourself versus SpoonsBudgeting spoonsRecovery mode variation in spoonsContracting CovidOpening upYikes, Long Covid?Tired of Pursuing AnswersLong Covid CenterAsynchronous communicationFinally Diagnosed Call to actionRebel HealthSocial media help – 2-edged swordUseful helpSome compassion, pleaseWhat’s in a Name?Chronic Disease Management – Diagnosis, Symptoms, Care, TreatmentInvesting in Long CovidReflectionPodcast 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: 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 episodes on YouTube from Podcast. Inspired by and Grateful to Jeff Horner, Yaneer Bar Yam, Melissa Reynolds Links and references Episode Proem Ants: Prolific and enigmatic. Image by Open Art AI in style of Paul Barson Prolific enigmatic conditions fascinate me. Prolific (many) is the opposite of rare (few), so not a rare condition. Enigmatic means mysterious riddle. Examples of enigmatic conditions include fibromyalgia, chronic fatigue syndrome, lupus, endometriosis, and long Covid. Enigmatic conditions put a spotlight on isms – racism, sexism, ageism, ablism, paternalism. They reveal a near-universal discomfort with uncertainty. And when you pull back the curtain to try to search or solve, you find the weight of corporate medicine, the research industrial complex, and vested-interest policy making. I know the frustration of years of misdiagnosis. I was misdiagnosed with cardiac disease when I had multiple sclerosis. My privilege insulates me from many cultural barriers and humiliation experienced by women, people of color, and those with mental and spiritual health challenges arising...

Turn-around: Grandson interviews Health Hats about his Zelig-like career path and choices: unpredictable, privileged, mentored, supported, and spiritually healthy. Summary Health Hats is interviewed by his editor, grandson Leon, delving into a discussion about his diverse and impactful career. The episode starts with Leon interviewing Health Hats about the origins and motivations behind the podcast, tracing back to a serendipitous naming and a road trip that solidified the podcast's visual identity. Health Hats shares his journey from opting out of a higher-paying job that required him to cut his long hair to embracing a path in healthcare as a psychiatric aide, which led him to nursing school. The story also touches on being a male nurse in the 70s, transitioning from direct care to significant hospital and quality management roles. Leon and Health Hats discuss the significant impact of personal decisions on career paths, the unpredictability of life, and the profound influence of one's birth and circumstances. Health Hats reflects on his efforts to improve healthcare systems, advocating for better staff and patient conditions and participatory health. The episode explores Health Hats' professional life, his philosophy on work-life balance, his role as a change agent, and his commitment to continuous learning and improvement. 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 introBirthing Health HatsNursing school – what’s hair got to do with it?Wanted a lifeFirst male public health nurse in Western MassWe don’t hire men in nursing hereRetiring in our thirties as back-to-the-land hippiesCouldn’t manage an emergency at homeTwelve-bed hospitalWest Virginia, a Third World stateAdvanced Cardiac Life Support Call to actionVolunteering for the Emergency SquadFrom direct care to managementChange agent: staffing and visiting hoursRemote Learning for a Master’s DegreeMoving onStudent of organizational healthOutspoken, driven change agentBest Boss EverThe will to change – leadershipNo, lay me offRetiringProfessional life, more than the jobCan’t keep a jobReflectionPodcast 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: 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. Five-minute episodes on YouTube. Inspired by and Grateful to Jim Bulger and Bob Doherty (deceased), Eric Pinaud, Jane Sarasohn-Kahn, Luc Pelletier, John Marks, Ann Boland, Lynn Hubbard Links and references Are medication error rates useful as a comparative measures of organizational performance? was published in The Joint Commission Journal on Quality Improvements in 1994 receiving the David K Stumpf Award for Excellence in Publication from the National Association for Healthcare Quality. The article was referenced in the book, Error Reduction in Healthcare by Patrice L. Spath in 2000. 1977 article about Danny van Leeuwen, the first male public health nurse in W Mass It sounds like a Zelig effect (if you know Woody Allen) or a Forrest Gump effect (if you know Tom Hanks) Jane Sarasohn Kahn, a blogging health economist West Virginia The University of Minnesota ISP Program Episode Proem As you may know, my production team includes Grandson Leon,