Health Hats, the Podcast

Danny van Leeuwen, Health Hats

Learning with people on the journey toward best health.

  1. 12/28/2025

    Retirement Improvisation – Onward: 2025 Holiday Letter

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

    25 min
  2. 11/24/2025

    A Third on the Shelf: Rethinking Power in Community Research

    Kirk & Lacy on shifting research funding away from federal grants: what happens to community partnerships when the money—and the rules—change? Summary Three Audiences, One Report Lacy Fabian and Kirk Knestis untangle a fundamental confusion in community health research: there are three distinct audiences with competing needs—funders want accountability, researchers want generalizable knowledge, and communities want immediate benefit. Current practice optimizes for the funder, producing deliverables that don’t help the people being served. The alternative isn’t “no strings attached” anarchy but rather honest negotiation about who benefits and who bears the burden of proof. Kirk’s revelation about resource allocation is stark: if one-third of evaluation budgets goes to Click here to view the printable newsletter with images. More readable than a transcript. Contents 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 capacity-building support to assist organizations in using data to answer complex questions.  Referenced in episode Zanakis, S.H., Mandakovic, T., Gupta, S.K., Sahay, S., & Hong, S. (1995). “A review of program evaluation and fund allocation methods within the service and government sectors.” Socio-Economic Planning Sciences, Vol. 29, No. 1, March 1995, pp. 59-79. This paywalled article presents a detailed analysis of 306 articles from 93 journals that review project/program evaluation, selection, and funding allocation methods in the service and government sectors. Episode Proem When I examine the relationships between health communities and researchers, I become curious about the power dynamics involved. Strong, equitable relationships depend on a balance of power. But what exactly are communities, and what does a power balance look like? The communities I picture are intentional, voluntary groups of people working together to achieve common goals—such as seeking, fixing, networking, championing, lobbying, or communicating for best health for each other. These groups can meet in person or virtually, and can be local or dispersed. A healthy power balance involves mutual respect, participatory decision-making, active listening, and a willingness to adapt and grow. I always listen closely for connections between communities and health researchers. Connections that foster a learning culture, regardless of their perceived success. Please meet Lacy Fabian and Kirk Knestis, who have firsthand experience in building and maintaining equitable relationships, with whom I spoke in mid-September. This transcript has been edited for clarity with help from Grammarly. Lacy Fabian, PhD, is the founder of Make It Matter Program Consulting and Resources. She partners with non-profit, government, and federal organizations using evidence and storytelling to demonstrate impact and improve program results. Kirk Knestis is an expert in data use planning, design, and capacity building. As Executive Director of a startup community nonprofit and founding principal of Evaluand LLC. He specializes in research, evaluation, and organizational data analysis for complex questions. 1. Introductions & Career Transitions Kirk Knestis: My name’s Kirk Knestis. Until just a few weeks ago, I ran a research and evaluation consulting firm, Evaluand LLC, outside Washington, DC. I’m in the process of transitioning to a new gig. I’ve started a non-profit here in Northern Virginia to provide mobile wheelchair and scooter service. Probably my last project, I suspect. Health Hats: Your last thing, meaning you’re retiring. Kirk Knestis: Yeah, it’s most of my work in the consulting gig was funded by federal programs, the National Science Foundation, the Department of Ed, the National Institutes of Health, and funding for most of the programs that I was working on through grantees has been pretty substantially curtailed in the last few months. Rather than looking for a new research and evaluation gig, we’ve decided this is going to be something I can taper off and give back to the community a bit. Try something new and different, and keep me out of trouble. Health Hats: Yeah, good luck with the latter. Lacy, introduce yourself, please. Lacy Fabian: Hi, Lacy Fabian. Not very dissimilar from Kirk, I’ve made a change in the last few months. I worked at a large nonprofit for nearly 11 years, serving the Department of Health and Human Services. But now I am solo, working to consult with nonprofits and donors. The idea is that I would be their extra brain power when they need it. It’s hard to find funding, grow, and do all the things nonprofits do without a bit of help now and then. I’m looking to provide that in a new chapter, a new career focus. Health Hats: Why is this conversation happening now? Both Kirk and Lacy are going through significant changes as they move away from traditional grant-funded research and nonprofit hierarchies. They’re learning firsthand what doesn’t work and considering what might work instead—this isn’t just theory—it’s lived experience. 2. The Catalyst: Why This Conversation Matters Health Hats: Lacy, we caught up after several years of working together on several projects. I’m really interested in community research partnerships. I’m interested in it because I think the research questions come from the communities rather than the researchers. It’s a fraught relationship between communities and researchers, often driven by power dynamics. I’m very interested in how to balance those dynamics. And I see some of this: a time of changing priorities and people looking at their gigs differently —what are the opportunities in this time of kind of chaos, and what are the significant social changes that often happen in times like this? 3. The Ideal State: Restoring Human Connection Health Hats: In your experience, especially given all the recent transitions, what do you see as the ideal relationship between communities and researchers? What would an ideal state look like? Lacy Fabian: One thing I was thinking about during my walk or run today, as I prepared for this conversation about equitable relationships and the power dynamics in this unique situation we’re in, is that I feel like we often romanticize the past instead of learning from it.   I believe learning from the past is very important. When I think about an ideal scenario, I feel like we’re moving further away from human solidarity and genuine connection. So, when considering those equitable relationships, it seems to me that it’s become harder to build genuine connections and stay true to our humanness. From a learning perspective, without romanticizing the past, one example I thought of is that, at least in the last 50 years, we’ve seen exponential growth in the amount of information available. Th

  3. 11/02/2025

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

    Your health data belongs to you—but how can you share it safely? Fabienne Bourgeois, MD, exposes the complex truth about privacy, permissions, and data control. Summary According to Fabienne Bourgeois, MD, patients want control over their health data, but privacy preferences and constant changes complicate this. The discussion is relevant to people with disabilities, caregivers, and others navigating complex health information. About 80% of people share common privacy concerns that current systems can’t address. The remaining 20% need more detailed controls and customization, though balancing autonomy with privacy remains challenging. Ownership means individuals have the right to participate in research and make informed choices. They need “digital intermediaries”— professionals who assist with data sharing—and genuinely intuitive interfaces. Privacy protections must remain a top priority as health and AI tools continue to develop. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents 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 Officer (ACMIO) at Boston Children’s Hospital. Fifteen years ago, we worked together, learning from emerging adults about their worries and issues with data sharing. We enjoyed catching up and reviewing the current landscape. For my followers who prefer the written word, this transcript has been lightly edited and organized for readability. When Life Throws Your Kid a Curveball Health Hats: Hi. When did you first realize health was fragile? Fabienne: Oh, that started pretty early on in medical school. I had some very transformative interactions and experiences with patients and families during my medical school rotations, particularly in pediatrics, which really led me to pursue a career in pediatrics. But there really were some extraordinary families. And it just became very apparent that things could change very quickly and that patients and parents were managing patients with really chronic conditions. Regularly, something could change—really change —and we had to be very vigilant about everything. And the families, in particular, were the most vigilant about their child’s care. Emerging Adults Matter Health Hats: When I met you, I think we bonded over the adolescent advisory team. Fabienne: That’s exactly right. Yes. Health Hats: I was so impressed by the adolescents’ engagement and how many of their observations were incorporated into the process and design. I found it to be a model for me. When I went to work for Advocates, Inc. in Framingham, which supported 40,000 people with disabilities, there were a lot of similar issues in terms of a continuum of cognitive, judgment abilities, communication abilities, and styles, and the challenge of understanding their preferences and their challenges, and then hard-wiring that into real life. What you did was open my eyes to a world that I wasn’t aware of before that. I was so impressed by the adolescents’ engagement and how many of their observations Your Medical Records Called—They’re Lost and Separated Health Hats:  Now that I’ve evolved to where I am now of the big project I’m working on is we’re developing a health data bank a receptacle for individuals to store any and all of their health slash medical data, whether it’s EHR claims PDF preferences journals so that then people could authorize the use of their data using a combination of private and public large language models to query that ever expanding and changing data set we’re in the really early stages of seed money. And I’m like, act you’re successful, right? Because when you are successful, it’s bang. It seems to me that the reason I wanted to talk to you was that I see the challenges that emerging adults face in terms of their preferences, rights, and safety as analogous — maybe not the same, but analogous — to language, relationships, and cognition, and that it’s fluid. It’s not like you set some standards. Because every situation is different at a different minute. So, I’ll shut up. One Size Fits All? Please! Fabienne: No, you’re exactly right. You’ve hit the nail on the head. It’s precisely what we are working on and trying to help because it’s very nuanced. And what’s very important is to understand that each patient is an individual, and each individual has particular preferences about who they want to share their information with. And that may be within their family unit or outside it. And we have to honor their privacy preferences. We discuss this particularly in the pediatric and adolescent populations because there are specific state laws and conditions under which adolescent patients can seek care without parental consent. Spoiler: This Affects Way More People Than You’d Think Fabienne: In those situations, we really make sure we maintain privacy in line with the individual adolescent’s preferences. But you’re absolutely right that this extends beyond the adolescent population. We see this often with patients with disabilities or with older adults who have other caregivers or other people who are proxies to their patient portal. So, they’re sharing their information with others, and there’s certain information they don’t necessarily want to share with everyone. And they entrust us with deeply personal information. And they want us to really take care of that information and keep it confidential if they choose to keep it confidential. Sometimes they really just want that conversation to be between them and their care team or their provider specifically. So you’re exactly correct. This really extends beyond the adolescent population. Can We Teach Tech to Understand ‘It’s Complicated’? Health Hats: When I break that down, I think the challenge of taking a pulse, meaning where do they stand at this moment? What do they understand are the nuances or the implications of their decisions? So it’s an understanding of life and self. Then there’s the technical of how. How does that get hardwired into something? And then there’s the interface, so people can go from their understanding, click a few buttons, and get what they want. And so it seems to me that you’re in the middle of all of that and that you can’t do your job if you don’t have excellent teams that can do, not necessarily everybody, but the whole team has to be able to deal with all of that. Fabienne: Yes, you’re exactly right. And it’s tough. It’s very challenging. We’re lucky to have a very strong team in our IT department working on all of these things. But we’re also dependent on the restrictions, capabilities, and functionalities that vendors have in their electronic health records and in the health information exchanges. And I think you noted this previously as well. There’s an explosion in the interoperability space, where we’re not just talking about sharing information with patient portals and proxy-to-patient portals, but across health information exchanges. So, we’re sharing across institutions and, increasingly, with m

    44 min
  4. 10/06/2025

    Catch-22.0: AI Creates Problems It Solves

    Healthcare AI isn’t a tech problem—it’s a mirror reflecting how our health system already fails. Uncomfortable truths from Datapalooza 2025. Summary We’re asking the wrong questions about AI in healthcare. Instead of debating whether it’s good or bad, we need to examine the system-eating-its-tail contradictions we’ve created: locking away vital data so AI learns from everything except what matters most, demanding transparency from inherently secretive companies, and fearing tools could make us lazy instead of more capable. Privacy teams protect data, tech companies build tools, regulators write rules—everyone’s doing their part, but no one steps back to see the whole dysfunctional picture. AI in healthcare isn’t a technology problem; it’s a mirror reflecting how our health system already falls short with privacy rules that hinder progress, design processes that exclude patients, and institutions that fear transparency more than mediocrity. The real question is whether we’re brave enough to fix these underlying problems that AI makes impossible to ignore. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents 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. I used the Auphonic app to clean up the audio and remove noise, and then the Descript app to create transcripts of all the recordings. I went into my Claude podcast Project (a Project is an ongoing thread with everything I’ve done with Claude for my podcast over the past three months). I attached the transcripts and prompted the AI platform to identify themes. OK, that was helpful, but dull. So, I prompted Claude to think like a tech-savvy teen with a sense of humor. Eureka! Now we’re getting somewhere. I edited heavily and then prompted Claude to identify clips of speakers that illustrated the themes. I used the Perplexity app for research. Finally, I did the last written edit with a polish from the Grammarly app. For audio, I returned to the Descript app, found the recommended clips, and extracted them. Then I recorded a video of myself, again using Descript. Compilation editing of the video was done with the DaVinci app. I should give production credit to Auphonic, Claude, Descript, Grammarly, Perplexity, and DaVinci. Paradox, Irony, Catch 22 Datapalooza 2025 showcased the health and care industry’s intense focus on Artificial Intelligence, whatever that means. My podcast acts as a Rosetta Stone to share the excitement of what I learn and deem important in my journey toward best health. How can we use AI safely? Let’s jump in with some lessons I learned. Burying the Treasure to Keep It Safe There’s a Data Privacy Paradox. The very health data that could benefit most from AI faces the most restrictions. Sushmita Macheri works with Medicare/Medicaid data—information about some of our most vulnerable populations—but can’t use AI to identify errors that could improve their care. Meanwhile, commercial entities are freely training AI on whatever data they can scrape. Therefore, the most sensitive and valuable healthcare data remains locked away while AI trains on potentially biased and unrepresentative information. Sushmita Macheri:  I work with healthcare, Medicare, and Medicaid data. I would like to upload the data so I can understand what errors I’m getting, but I’m unable to do that due to the restrictions we have at work. So, if I were able to upload one, let’s say, like a file that I am having errors with. Health Hats: So, what kind of errors, like missing data, what are the errors that you notice? Sushmita Macheri: I work with Tableau, mostly.  Sometimes, if I’m having issues with a calculated field, I would like to upload that calculated field or the logic behind it in the calculator to try to understand what the error is, but I’m unable to do so. For me, it’s the biggest challenge. Bias, Treating the Chart, Not the Patient Bob Stevens points out a harsh irony: AI makes decisions about patients while being trained on data that intentionally excludes patient perspectives. The people most affected by AI decisions had the least input in training the systems. It’s like having a medical advisory board that leaves out doctors and patients, then questioning why the recommendations fail. Bob Stevens: I am concerned about bias, as I mentioned, and that really worries me for two reasons. First, AI uses all available content, and as patients, we know that patient perspective content has not been well represented. Now, as AI starts making decisions based on this, all the content it has is just what’s available. It’s gathering it all. We haven’t been well represented in that process. So, it’s going to stay biased, right? Without patient information and the patient perspective, that creates a bias. Bob Stevens: The second type of bias is related to how it’s designed. It’s not being general because it’s a technology, while they’re asking for patient input. There’s also bias in the design process because of who is doing the designing. So, you have two levels. One can be considered intentional, but the other is the accumulation of all this data that is there. We’re not represented in and haven’t been represented in. And how do we change that? The incremental change in the AI dataset is expected to take decades. What bothers me is that we are now relying on AI to assign a label that can then trigger a response or action. Bob Stevens: That’s a high-risk moment, asking AI to make a decision that’s inherently high-risk. So what AI should always do is say. Here’s what I see. Now consider this when going in. And that brings us to the second part of a PCORnet study that I was involved in, which focused on the ER.  And we had our electronic health record, and depending on how certain things, it was called a natural language processing process. And it looked at all these different things, and then based on that, it said, look to this, or looked to that, or looked to the other.  It was those AI prompts that were based on the information from the electronic health record, which was then entered into the electronic health record. For that physician in the ER, they would then need to do certain things. Circular Dependence, Chasing Your Tail Rolanda Clark hits on something profound: we need expertise to verify AI, yet AI is supposed to democratize expertise. She notes you “still have to educate yourself on how to check the information,” but if you already have that expertise, why do you need AI? And if you don’t have the expertise, how can you verify it? It’s a circular dependency that reveals AI’s limitations rather than its strengths. Rolanda Clark: So, I’d say with AI, it’s not foolproof. You still have to educate yourself on how to verify the information that’s being presented, and that’s hard to do. Health Hats: I’ve started saying, ‘What is wrong with your algorithm?’ Correct. And I get some kind stuff I didn’t think about that makes me wanna burrow in more. Rolanda Clark: But I think that’s imperative. I think you must counter to mitigate this like b******t. Health Hats: Because you need to do that with experts anyway, because just because they’

    23 min
  5. 09/07/2025

    Letter: Trust Me, I’m Skeptical

    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.   NC: Only noncommercial uses of the work are permitted.    SA: Adaptations must be shared under the same terms. Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines. Disclaimer The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

    4 min
  6. 08/10/2025

    Listen First, Lead Together: Advocacy and Power Dynamics

    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. Learn with People implies endless curiosity with the people I travel with. Makes sense, I’m a networking extrovert who learns best with others. I prefer to travel with selected peeps (my team). Best health means accepting current circumstances and maximizing abilities, function, and spirit. So, we’re headed to a relatively better place, or at least the best possible health given whatever circumstances of the moment. A journey typically involves a destination (goals), tactics, and costs. The only guaranteed person on the team is me, you, or us, depending on whether it’s community health. Otherwise, the team is constantly changing. Who’s on the team, who’s off? Travel implies choices. Right, left, up, down, stop, rest, shop, eat. We can’t continue without making decisions together.  Decision-making means power, group dynamics, and trust-governance. I broke all this down to get to governance, small group governance. After 50 years in health care, I’m still a student of governance.  How do we, as mission-driven teams, attain our health goals with the power we possess? How do we collectively nurture healthy group dynamics with transparent and somewhat equitable power? Just as my next-door neighbor, Ronda Alexander, was about to move, I learned that we shared an interest in community advocacy, governance, and power dynamics. And where was she moving? Back to Detroit—my old neighborhood. Small world. I took the opportunity to record a chat with Ronda before she left. When did you first realize health was fragile? Ronda Alexander: It was becoming a parent. When you become a parent, you’re responsible for somebody else’s health. And up until then, I’ve been relatively healthy all my life. I had taken it for granted. But I think recognizing that I have this little human that I’m responsible for and have to make sure to keep them healthy, and that was a time when I was like, oh wait, health is, it’s tricky. It can change at any moment. My kiddo has nut allergies. They had an egg allergy, and they have asthma. And so, just things I hadn’t paid attention to before caused me to think about the environment around me. I think another thing that helped me realize health was fragile was recognizing the interconnection between physical health and the community and environment around you. When I started working for an organization focused on health equity, I learned that the social determinants of health — your community, your environment — have a significant impact on your health. And that answered so many questions for me. Vital Village Network Health Hats: Can you tell us about some of the organizations you’ve been working with? Ronda Alexander: For the last seven years, up until about two months ago, I worked for an organization called Vital Village Networks, based out of Boston Medical Center. The focus of that organization is health equity and child wellbeing, but from a community leadership standpoint. Upon joining the team, I was responsible for building a national learning community called The Networks of Opportunity for Child Wellbeing, supporting and working with 10 coalitions from across the country across 10 states who were working on various aspects of health equity. We’re working on some specific innovations in their communities. Centered on prenatal to eight. So early, early childhood. Moving from preschool to elementary school, what does that mean for families, and what does it look like? Leadership, Impact, and Measurement Some coalitions focused on birth equity and birth justice, while others focused on community leadership or community grant-making. They all approached it from different lenses, but one key aspect was conducting research and measuring the impact of their work on their respective communities, as well as examining the collective impact. In addition to helping them determine what we’ll work on together, we also need to figure out how to uplift the folks we’re saying we want to help and support, putting them at the center and in positions of leadership and power. We also asked, “What does it mean to measure that, and how do we design systems of measurement together?” We designed survey questions to understand how people would tell stories and what that process looked like, co-designing those evaluation tools. Data Storytelling We recognized that research and data can come from a variety of places. It can be stories, it can be numbers, it can be a combination of the two. And that folks in the community, folks most impacted, can have some ownership over that. We often would do workshops on building capacity, helping folks recognize that they have a story to tell, uplifting different kinds of data, storytelling, and using that data, whatever information they wanted to do to impact change, then to say, okay, we’re noticing this about our community based on this data. Now, how are we going to respond to it? Community Research Collaboration Health Hats: The organization that you worked for was a community-based organization integrated with a research team. Did that originate out of the community? Did that arise out of Boston Medical Center? What was the academic connection? Ronda Alexander: The founding director of Vital Village Networks, Dr. Renee Boynton-Jarrett, was a pediatrician and a researcher by nature. I launched and founded the organization. First, we’re starting by listening to the community and understanding their stories and needs. The organization’s three pillars focused on community leadership and design. So, we listen to the community and bring people together. How do we work together? And then, how do we use data as a catalyst for the transformation? As the organization grew, it started to focus very locally in the Boston area. We have grown to have a national arm, which I mentioned earlier. But it also has a research and evaluation arm. So, designing and co-designing research efforts within the community. I was connected to it. I wasn’t necessarily d

    46 min
  7. 07/19/2025

    Never leave your shit on someone else’s farm!

    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. 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. Introducing Shannon Hayes Fortunately, I have a dear friend, Shannon Hayes, owner and CEO of Sap Bush Hollow Farm in Upstate New York – West Fulton. Shannon and I met 25 years ago when my wife and I were buying lamb, chicken, turkey, and eggs from her parents. Shannon podcasts, too. Warm, humorous, informative: The Hearth of Sap Bush Hollow Podcast & The Radical Homemaker Blog. I recommend them.   This conversation with Shannon took place in February of 2025. Shannon is informed, humble, and eager to share.  I’ll cut in a couple of times. Not because Shannon’s tale needs a drop of translation or background. But I’ve learned more from these words each time I’ve touched them in production. I needed a second to digest what I just heard. I’ll do that aloud with you. Appropriately, we jumped right in talking about shit, bird shit. Shannon: Men are allowed to use that term without any problem, but women are looked at as being foul if they use it. However, I’m now 51 years old and I couldn’t give a shit. That’s so funny because that is the language. That we use. You don’t say there’s fecal matter. You don’t leave there’s manure. It’s fast, it’s effective. It’s what it is. Health Hats: Is a cow shit called something different than chicken shit? Shannon: No, shit is shit. We identify species, then shit. Health Hats: Okay. All right. That’s good to know. Shannon: Hi, Danny. How are you? Good. I’m glad to see your saxophone. Health Hats: I was thinking about how we met. I met your mom first. Because we were customers, we met you on the farm? Because we did. I thought you were in school or something. Shannon: I’ve been with Sap Bush Hollow since 1979, when we moved there. But I went away to college. I met you when I was still in grad school. So, I used to help when college was out for the season, then for the summer. And then, when I started grad school at Cornell, my mom was handling all the sales through the farm kitchen. Then I came home every time there was a sale. I also came home every weekend. And, helped on the farm. So yes, it was a big event. She would’ve had to be back there in time to help. Big event with the chicken pickups. Oh yeah. Yeah. And lamb. Yep. A lot of lamb. Health Hats: A lot of lamb. Shannon: That’s still the centerpiece at Sap Bush Hollow. We do lamb better than anybody else. Our lamb is the best. Health Hats: Shannon, please introduce yourself. Shannon: I’m Shannon Hayes, and I’m now the CEO of SAP Bush Hollow Farm, which my parents founded in 1979. Health Hats: You’re located in upstate New York. Shannon: We are located in West Fulton, New York. Anyone from West Fulton is very proud to tag that onto our name because nobody else knows where it is. But it’s in West Fulton, New York, which is in Schoharie County. That’s about 45 minutes west of Albany. Bird Flu: Context and History Health Hats: The reason is that you and I have been talking. I was particularly interested in your blog post about bird flu. The reason for my interest was that there’s often a lot of abstract talk about bird flu, and there’s a lack of epidemiological information about it. I appreciated your discussion of the topic on your blog. Oh, and what’s your blog called? Shannon: It’s https://theradicalhomemaker.net. You can also find it at https://sapbushfarmstore.com. Health Hats: Okay, thank you. Anyway, I found the concept of having protocols for safety to be intriguing. So, can you explain what that means in terms of establishing protocols for safety against bird flu? Because obviously you have a flock. Shannon: I’m going to give you a little bit of a historical context first. You came into the circle of Sap Bush Hollow at a time when farmers were really trying to reach out and connect very deeply with the public. And you were one of the leaders in the farm-to-table movement. As far as I can tell, you were one of the original people who decided it was worth connecting directly with farmers. That was a time, and the expectation of small, local sustainable farmers is that our lives, we were all told, had to become an open book. We needed to be very transparent in what we did and invite the public in to see what. We were all about it, so they could learn to trust us, because everyone thought that if you wanted safe food, you had to go to a grocery store. They had to learn to trust the farmer, as well as trust us as people. And you were one of the leaders in moving forward and saying, ‘Let’s break this barrier.’ Let’s get to know the farmer directly. And that’s how you started stepping foot on SAP Bush Hollow Farm. Health Hats: I wasn’t a pioneer. I was a back-to-the-land hippie living in rural West Virginia in an intentional community (commune), more rural than West Fulton. We kept chickens, bees, and, for a brief period, goats and a horse. We were used to getting our meat locally. We were excited to discover Sap Bush Hollow in upstate NY. An Ecosystem for Biosecurity Shannon: However, before that time, my dad, who was a professor of agriculture, used to always talk to us about biosecurity and closing the farm loop. We always have to think about biosecurity in terms of if you bring an animal on, you don’t want to bring disease onto your farm. So, for example, we don’t bring other people’s boars onto the farm. We artificially inseminate the pigs. You try to, we call it keeping the loop closed. You try to keep the farm as an ecosystem. This era in American history, in which small farmers opened up their land and welcomed people onto it, marked a departure from the closed-loop system. But it was great. It was a way to connect with customers and

    34 min
  8. 06/21/2025

    First We Listen, Then We Act. Informatics in Decision-Making

    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 Heyward 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, and I’m starting the episode production in early June. Before I can create a lede introducing the episode, I need to clarify its purpose. What action do I hope readers, listeners, and viewers will take after consuming this content? The lede for the presentation is: Collaborate with patients, caregivers, and their clinician partners to develop and evaluate tools that inform health and care decision-making. So, is my purpose to share the recording of the presentation and hope podcast consumers take one more step in partnerships? Or is the process of creating a presentation more valuable to my followers? Can I do both? 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. Prepare for Action What is my ambivalence about attending and speaking at conferences? As an attendee, I want to learn a nugget and leave inspired to take a specific action that could alter my path. When I listen, I silence my inner voice that asks, ‘How does this affect me?’ What do I want to say? So what? However, as a patient/caregiver partner and advocate, listening is the beginning. What did I hear and learn? How does that connect to other ideas and people? How can I adjust? Real change happens when I shift my habits one step at a time. I had six months to prepare. As a world-class networker, I engaged others in the development of my presentation. My grandsons and international colleagues, who weren’t experts in my topic but were knowledgeable about communicating with diverse audiences, leading to action.  They asked me what I wanted attendees to leave with: curiosity, connection, energy, and perhaps, take one more step in collaboration. We discussed using a multimedia approach, keeping the audience engaged, and managing a hybrid conference (in-person and virtual). This episode focuses on collaborating with patients, caregivers, and their clinician partners to develop and evaluate tools that inform health and care decision-making. Start with Self-Knowledge I’m a two-legged, cisgender, old white man of privilege who has MS. I’ve been a care partner to my grandmother, my mother, and a son’s end-of-life journey. I’m a nurse. I have led several EHR implementations. I’ve held the C-suite position of VP of Quality Management in healthcare and have also consulted. I wear a lot of hats, hence. Health Hats. MS Detective: Dr. Sherlock So, when I was diagnosed with secondary progressive MS, my neurologist said, “you don’t know anything about multiple sclerosis.” I know a lot about multiple sclerosis, but I don’t know anything about you. Your job is to learn about multiple sclerosis, and my job is to learn about you. I thought I had died and gone to heaven. Then he said, “okay, so when you come back, I want you to tell me what’s important to you.” I talked to my wife and kids, and I returned with the idea that I want to progress as slowly as possible. I want to stay safe. I want to keep playing my saxophone, and I don’t want to interfere with my pathological optimism. He said, “we can work with that.” Activists, Disruptors As you can probably tell, I’m an activated patient, and you may be one too. You’re certainly an activated informaticist, or you wouldn’t be here. Activated people are disruptors. And they are most likely to use the products that you work on, and they’re going to make ’em better. The rest of this presentation will help you understand what it is, assess the current situation in your shop, and then you can decide what to do next and how to adapt. The Bottom Line The bottom line here is that we’re beginning right now with self-knowledge. You learned a little bit about me. You’ve just learned a little bit about each other. We’re going to focus on the triads of deciders patients, caregivers, and their clinician partners. We’re going to appreciate people who hack healthcare; we’re going to talk about engagement as a dynamic of power. We’re going to think about the infrastructure that collaboration operates within. And I’m going to encourage you to take one more step in your collaborations. Health and Care Decisions, Like Kitchen Renovation Making decisions in healthcare is a lot like putting in a kitchen. There are endless decisions to make: the cabinets, the workflow, the appliances, and the hardware. Are you going to use gas or electricity? Your budget versus what you want. In healthcare, making informed decisions about health and care is a similar process. My wife and I made decisions about our kitchen together, which really meant she made the decisions, and I cared about a few things. I cared that the heavy things were low. I cared about the lighting, and I wanted to ensure we had the best hardware possible, as well as plenty of room to move around. But otherwise, she made all the decisions. And it’s like making healthcare decisions. I vetted, and I trust my wife and my partner clinicians. Except for a few things that are important to me, I’m happy for them to make the decisions. There are just too many, and it’s based on the things I said before. I want to keep playing my saxophone. I want to stay safe; I don’t want to mess with my pathological optimism. However, as informaticists, we don’t know who is making the decisions. The work we do needs to benefit all those people, for that whole triad. Bobbleheads of Informaticists We’re all informaticists. I believe in bobbleheads. These bobbleheads you see here are visible from my desk. Bobbleheads are essential because they give me an idea of who my audience is when I’m doing my work. It’s like, who’s my audience? You might think of them as personas or use cases. The diversity of people is just incredible. I find it helps me t

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Learning with people on the journey toward best health.