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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

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

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

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’

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. [email protected]. 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)

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

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

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

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, so I went to a church for draft counseling. My counselor invited me to become a counselor, helping men learn the process, make life decisions, and execute those decisions. I went to college and lived in several group settings. We had to decide how the chores would get done, meals made, bills paid, and transportation arranged. While protesting the Vietnam War, I learned how activists organized rallies, and how the University was run. I gained insights from my professor friends about how change happens. While raising kids and homeschooling, my wife and I experimented with participatory democracy. The same issues arose: chores, money, and who sits where. After that, we lived in an intentional community with four other families on 160 acres. We needed an infrastructure for effective decision-making. We formed a corporation to own the land, created bylaws and a Board of Directors, and established rules for joining and leaving, paying taxes and bills, and behavior guidelines. As a corporate change agent, I was fascinated by governance, managing clinical and IT teams, and participating in mergers. Since then, I have served on several Boards and chaired one. The most impressive governance I’ve seen in sixty years is the World Health Network, PCORI, and the COVID pod created by several family friends. Forming a Pod I spoke with Bevin Croft and David Weintraub, who represent four couples with pre-and primary school children, forming a pod to manage their children’s education and lives together while remaining safe. I’ve known Bevin since 2007. We became fast friends; I officiated at her wedding. Health Hats: When did you give what you were doing a name? Bevin: We used the name ‘pod’ because that was already like in the consciousness, like on the internet, as people were doing. They were creating pods. Health Hats: When was the first time you did that? About yourselves? Bevin: Yeah, we broke the seal. We had been discussing it, and we were all hanging out outside with the kids, which we had been doing regularly. And it was in May, although I don’t remember the exact day. And we were just like. Fuck it. David: Yeah. We’re like, ‘ This is stupid. ‘ We’re gonna do it. This is dumb. Like, why don’t we just hang out? Bevin: We just started hanging out, and we never stopped, David: But there were some slight complications because the Owens moved to Hawaii. I think they moved in mid-April. I think they moved on April 15th or something. And they went for six months, from April 15th to October 15th. Bevin: It was our very close, tight-knit group of 19 people, five families. Four of the five families decided to do this. David: Three. No, the Chulas were not part of it. Bevin: The Owens were before they moved to, that’s right. Yeah. So, when we were like, screw it, we wanna hang out. It was these four families. The fifth family had another family with whom they had already podded; they also podded with another family with whom they shared some childcare arrangements. Yeah. Bennie and Allie. So they didn’t pod with us. So, it was the four. Anyway. Yeah. It was at least these three families. And then a couple of other close families came and went. Rules We just started hanging out together. And it became evident very quickly that we also had to establish some rules because, back then, it was as if you were hanging out with us and your parents. Then what if we get each other sick, and then we bring it to, yeah, a parent, and then that parent gets sick and dies, and then we live with the guilt that we were messy? Those were the kinds of stakes and conversations we had to have. So, effectively, we didn’t spend time with our parents. David: Correct. Bevin: And hung out with each other. One of the calculations was that for day-to-day sanity and closeness, and this is true. In general, I think your friends are the most important for people.  Not for everybody, but for us. And for a lot of people in our stage of life. Yeah. Having close friends who, with other kids the same age as your kids, was more essential. Yeah. To us socially. Not easy David: It was also hard. It was hard for me because my sister lives in Arlington and has two boys. She was upset that we couldn’t see them outside very often. We would go bike riding in a parking lot just to see each other. But we couldn’t hug or be in close contact, we couldn’t be indoors, and that wore on them, and it wore on us a lot. But Bevin is right. We chose that because Jasper and Ivy live five doors down, right? And it just made more sense to have a close, literal, and emotional connection as the main connection at that point. However, it was challenging, as I had numerous tense conversations and non-conversations with my family members about that. Nothing was ever said that was mean or vindictive, but I think everybody felt the tension. Like I felt it, Jessie felt it, my sister felt it, her kids felt it, our kids felt it. So that was really hard. But at the same time, I think that having that pod was really necessary at that point. Priorities Health Hats: You just mentioned a specific challenge with it. What was challenging for you? Bevin: About our arrangements? I loved it. I didn’t have anything. It was clear to us that we wanted to spend time with these people, which was our priority. Everything else about the pandemic was challenging, but the actual pod arrangements themselves were the greatest challenge, as they involved negotiating everyone’s needs. Health Hats: Needs meaning alone time? Quibbles? Rules, Contract, Risks Bevin: No. It was the rules. It was knowing the rules. David: You should tell about the contract. Bevin: Yeah. So, it became clear quickly that there was no way we could. You know that. I don’t know the details, but I’m sure it was for families now. Health Hats: And you couldn’t wing it. Bevin: We couldn’t wing it. Yeah. We couldn’t just say, ‘ Oh, we’ll find out.‘ It was like, no, it felt like life or death, right? No. We cannot infect the

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 them. — Irene Nemirovsky. Eleven of us from New England and Houston traveled to Cuba for a week in January for a music-cultural event—a Band Camp organized by Dan Fox and Arlington, MA’s Morningside Studios. Our group ranged from no Spanish (me) to fairly fluent (Sonya and Dan). Our host, the Havana Music School, was also fluent in English along this same continuum. Consequently, we communicated in three languages: Spanish, English, and Music. Few people were fluent in all three. My teacher, Pachy, and I managed well with some help from translation, pantomimes, and trial and error. We enjoyed exchanging knowledge, with me teaching him about’ herding cats’ and ‘God willing and the creek don’t rise.’ However, we had difficulty when he spoke about ‘black notes.’ I thought all notes were black, and he meant that quarter notes were the black ones. The Morningside Music Studios group traveled to Cuba for a week of music. Hosted by the Havana Music School, we enjoyed two hours of individual lessons daily, followed by two hours of rehearsals with students and teachers in two ensembles working on five tunes. We did some sightseeing in the afternoons and attended one venue of the Havana Jazz Festival each night. The week culminated in the ensembles’ performances at a local restaurant. Since the Havana Jazz Festival had concluded, many local musicians attended our performance, cheering us on and joining in to sing. This episode is an unpolished mix of photos, videos, and social media posts about our music, sightseeing, Airbnb, and the Havana Jazz Festival. I suggest watching the YouTube video for the best experience. We’ll begin with an Instagram post about our luxurious accommodations in Havana, close to the Music School. The music background is Mambo Inn by Mario Bouza. Link in the show notes. https://www.instagram.com/p/DGY2KtJRCNZ/ We’ll follow that with the ensemble’s performance of Sofrito by Mongo Santamaria, then a conversation with Claudia Fumero and my wife, Ann Boland. https://youtu.be/yCXa7IGtBIw   Havana Music School Claudia Fumero and her husband, Miguel, own and operate the Havana Music School. We recorded the audio of our conversation about the school. My wife, Ann Boland, assisted with some translation. This episode’s video includes photos and clips of our fellow students and teachers, along with a tour of the old city. https://health-hats.com/pod233. Health Hats: So Claudia and Ann, thank you for being here with us. Claudia, introduce yourself and tell us where we are. Claudia Fumero: My name is Claudia Fumero. I come from Cuba, and I have a music school—the music school shares Cuban music and Cuban culture for foreigners. Ann Boland: Sharing the culture that was part of music for foreigners. Plus, she probably figured Americans would listen to this, which would be good for their school. Health Hats: Okay. So is the school for foreigners only? Claudia Fumero: Yeah. Now at this moment, it’s for foreigners. Health Hats: Yes. And foreigners who are not Cuban can be anywhere. Claudia Fumero: Yes. Yeah. Havana Music School – Morningside Studios Connection Health Hats: So we’re here with a group with Dan Fox that has had a relationship with you guys for some time. And how long has that been? Claudia Fumero: I think it’s mostly four or five years now. Yeah. Yeah. Because yeah, he wrote us our, because we are the website. Then he writes us. Health Hats: Oh, the school is HavanaMusicSchool.com. Yes. Okay. So anybody can see it? Yes. I understand you have an Instagram page, too. Claudia Fumero: Yes. The same, @HavanaMusicSchool. Health Hats: We’ll have to check that out. Yeah. Managing the Business What’s your role? What’s your job? Claudia Fumero: Now, in this moment? I’m the manager. Yeah. Okay. And I’m teaching salsas, too. Now I respond to every email, uh, yeah. I call, uh, the teacher. Yeah, yeah. Arrange the lessons. Yeah. Okay. For the student. Sometimes, they came for two hours, one hour, or for more time. Maybe one week, one month. It depends on the students, but now I think the people came more for a short time. Maybe two hours, one hour. Yeah. It’s the now in this time. Ann Boland: Yeah. Just trying to try it out. Maybe just, Claudia Fumero: I don’t know, maybe the travel is changing. The world is changing. People don’t have a lot of money and spend a lot of money. I don’t know, maybe it’s a big… Health Hats: It’s a big deal being a businessperson. The business is you and your husband. And so, um, how did you decide you wanted to do something like this? Claudia Fumero: Yeah. First, uh, the idea for the school was my husband, Miguel, yeah. He went to, we met, and he wanted to stay in Cuba, and he thought, I need to do something to stay in Cuba with you and create the school. In the beginning, the teacher, the student going to Ann Boland: Oh, they went to the teacher’s house. Claudia Fumero: The teacher’s house. The first and after, we create the space with the instrument for the teacher and the students. Health Hats: The germ of the idea, the beginning, was being the connector. Yeah. Between students and teachers. Claudia Fumero: Exactly. Connect Health Hats: the student with the teachers. Okay. And at first, they went to people’s homes. Yes. Teachers’ homes. Yes. And then I can see that, especially if the group gets large. Mm-hmm. Or your, yeah. It’s much nicer to have a place. Claudia Fumero: Exactly. So Health Hats: Then, was this the first place? Claudia Fumero: We start in another area of Havana but in a small house with two rooms. But it was very nice because, at the beginning, Obama came to Cuba, the country was opening, and many people came. Cuba was interesting in the experience, uh, for. Was amazing. Managing the Stay Health Hats: Okay. And then it got big, and it felt like you were successful. Yeah. And the price of success. Yeah. I did. Being of a bigger play, I think, I know for me, I play bar

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 due to many insurers embracing algorithm-driven decision-making systems that often automatically deny coverage for services that should be included. Instead, they might say they don’t cover it because the appropriate code was not included when billing. So, the provider claims, ‘ Oh, we don’t cover that because the code was missing, ‘ even though it should have been included. I feel as though I’ve been a victim of some of these automated systems, which have significantly impacted my life and pushed me to understand that these AI systems are not hypothetical. We live with them every day, and we don’t have a lot of insight into them as consumers or citizens. And that really pushed me into this responsible AI space of thinking. How do we develop and use algorithms that align with how people would treat each other? Not necessarily how algorithms and robots would treat each other. Health Hats: Are you saying that this is a way to be more transparent about what’s in the algorithms? Emily Hadley: That’s a piece of it. Building Guardrails with AI Governance Health Hats: In something you sent me to educate me more about what you’re doing, you talked about algorithm review boards, and I was trying to picture them. Who’s around the table? Can you tell us a little bit about what an algorithm is? Is it real? Is it theoretical? Emily Hadley: Yeah, I’ll launch right into it. I’ve been passionate and interested in this since I saw more companies embrace AI, especially in the United States. States don’t have laws to guide how companies, academic institutions, nonprofits, and government organizations use AI. Certainly, some legislation and rulemaking is probably coming, but in the absence of it. Organizations need to decide how they will manage AI from a risk perspective. This includes reputational risks to the organization, its customers, and the population at large. Also, from an equity and justice perspective, how can AI systems align with our organization’s mission and values? One of the things that I started noticing at my own organization was that we have something called the Data Governance Committee, which existed before ChatGPT became a big thing and before everyone talked about AI. The data governance committee was focused on how to protect data on the projects that we work on. Many projects involve private health information or other personally identifiable information. We need to ensure that even before GPT, we didn’t want to upload this information to the cloud or expose people’s data in a way that was not permitted. This group has also adapted to become an AI review group. So, when someone at our organization wants to use AI in their projects, I recently wanted to use AI to help summarize some text responses that we were working on. Before I moved forward, I needed to check with the data governance committee to ensure that it aligned with RTI policies and that I was using the data in a protected and secure way. I assumed, and this research confirmed, that other organizations are doing the same thing. They are putting together groups of people, especially in the finance and health sectors. To your point, they don’t all look the same. Every organization is doing what works for them. At my organization, the data governance committee includes our corporate council staff members, ethics officer, data privacy officer, and a couple of subject matter experts like myself, who bring a lot of different data or research pieces to the table. Finance organizations, especially banks, have had a long history of risk assessment committees for various credit scoring or lending algorithms. They’re mostly adapting a group, sometimes adding some new AI expertise, but a lot of that expertise is already in-house. I would say the health groups have done some of the most interesting and innovative work in this space because this type of review is new for many of them. It’s similar to some FDA-type review work they’ve done. Health Hats: Or IRB review. Hallucinations and Validation with AI in Research Emily Hadley: Exactly. As part of this research, we investigated whether IRBs could do this work. And what we heard was actually a resounding no, they did not consider. Health Hats: it’s a different focus. I’ve been on an IRB, and there is this business of being a generalist, so there’s value in having a generalist or two generalists in a group of many experts. Okay. So, what do you think the role of consumers is on review boards and algorithm review boards? Emily Hadley: I’m noticing a focus on affected communities, especially in the health sector. This includes patients and clinicians, particularly those engaged in the work. It’s not an algorithm review board but for the long COVID research you mentioned. We have patient representatives involved in all of our manuscripts. I was just at a clinician review meeting last Friday, and it’s incredibly helpful to have someone provide insight when determining whether we prepared this methodology correctly. Are these initial results what you expected? Do you feel you have a say in this process and how it’s being developed? I’ve also observed tech companies embrace that level of stakeholder involvement. It’s more consumer driven. They want to create products that people will use. However, I am encouraged to see the participation of affected communities because I believe that’s where many revelations occur. Health Hats: Let’s take a step back. What kinds of AI are used in research? Emily Hadley: Yeah, that’s a great question. In research, we see it using a couple of different areas. One of the biggest is information gathering, extraction, and summarization. We’ve been using it for literature reviews to help summarize or get key points out of particular papers. We’ve been excited that it allows people with different educational or literacy backgrounds to interpret papers. It can be really frustrating to work with a peer-reviewed pu

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: [email protected] 🌐 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, a healing force, stays, even increases. I need joy, celebration, and rest every day. I need inspiration (you).  Call to action What do you do for self-care? How can I support you on these platforms? Feel free to reach out to me on any platform or medium. I’m here to listen and will do my best to respond. While I figure out the best channels, you can email me at [email protected]. As usual, you can find everything Health Hats here https://linktr.ee/healthhats. Music for the Soul Today’s music selection is The Weight by The Band Featuring Ringo Starr and Robbie Robertson | Playing For Change | Song Around The World. Voices for the Mind I’m following Helene Epstein’s Patient No More  Chapter 2: The Very First Thing You Should Do, Today. The easiest weapon against misdiagnosis is in your phone. Podcast Outro I host, write, and produce Health Hats the Podcast with assistance. I’m grateful to you who have critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. Love ya, see you around the block. Related episodes from Health Hats https://health-hats.com/pod226/ https://health-hats.com/pod171/ https://health-hats.com/pod181/ 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. [email protected]. 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)

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, Kristin Carman, 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 – Susannah Fox Episode Proem Learn with people on the journey toward best health. That’s my tagline. Getting to best health involves many health and care decisions, big and small, day-to-day.  The learning part includes a collaboration between patients, caregivers, and their clinician partners using evidence and experience to inform health and care decision-making. Unless implemented by this triad of patient, caregiver, and their clinician partners, evidence or research is useless, merely ink on paper or bytes in space. Research is rarely implemented unless it’s disseminated (shared). Sharing means spreading the word – disseminating research findings to deciders. This podcast is a dissemination tool, along with conversations, conferences, scientific journals, social media, sermons, newspapers, and books. Implementation is doing something with the research results, like modifying a habit, changing a workflow, taking a pill, or getting help. Share and Use: Dissemination and Implementation Most industry investment in dissemination and implementation (D&I) of research results focuses on providers – clinicians and medical institutions, not patients and caregivers. Why? Patients and caregivers are the deciders, the end users, and implementers of their health and care decisions. I prioritize directly sharing research results with patients and caregivers in my advocacy work. I’m grateful that the Patient-Centered Research Outcomes Institute (PCORI), where I am a member of the Board of Governors, strives to meet the challenge of D&I to and with the public. 2024 Academy Health D&I Conference Whenever I prepare for a conference, I come up with two questions to ask people I don’t know. When I prepared for the 2024 Academy Health’s Dissemination & Implementation Science Conference, I decided to ask, “How do you scientists partner with patients and caregivers in developing your D&I studies?” and “Why don’t more patients and caregivers attend this conference?” The first three people I asked looked at me blankly. Was I having a stroke? Was it my wheelchair or my hat? Then I shifted and asked, “How do you scientists partner with implementers to develop your D&I studies?” Eureka, now everybody I asked had thoughts and was eager to speak and let me record. According to Scientists, What is D&I? Let’s stop briefly and consider some D&I principles and methods that patients and caregivers might find helpful. – Dissemination science studies the targeted distribution of information and intervention materials to a specific public health or clinical practice audience. The intent is to spread knowledge and the associated evidence-based interventions. Communication and Dissemination Strategies To Facilitate the Use of Health and Health Care Evidence (2012).  More about references in the show notes. I’d say spreading the right message for the right audience, using the right channels in the right context. – Implementation science studies the use of strategies to adopt and integrate evidence-based health interventions and change practice patterns within specific settings. Communication and Dissemination Strategies To Facilitate the Use of Health and Health Care Evidence (2012). I have trouble with the focus on practice patterns, which presumes that clinician behaviors and clinical structures are an effective bridge for research to the public. Another definition is the study of how best to help clinics/schools/communities implement evidence-based interventions (EBI). Dissemination and Implementation Science to Advance Health Equity: An Imperative for Systemic Change. This was the 17th annual D&I Conference, with several people on the dais mentioning the irony that, on average, it takes 17 years for just 14% of original research to make its way to practice. This is a tough-to-replicate 2000 published study. Managing Clinical Knowledge for Health Care Improvement. On the one hand, it took 30-40 years after discovery for handwashing to become accepted. On the other hand, the Covid vaccination was rapidly implemented.  I’m loving this rabbit hole. A 2024 article in Translational Behavioral Medicine noted that as few as one in seven (14%) of evidence-based practices are ever implemented, with an additional 4–12 years from guideline issuance to implementation, based on 2021 estimates for cancer treatment—embedding implementation science in the research. I can’t help laughing. If 17 years later, this lack of implementation using the pervasive methods must mean that despite spending hundreds of $billion on research, something is fundamentally wrong with our approaches. My conversations with attendees of color, rare diseases, and from countries, not the United States, suggest that they focus more on research with communities and communities with research. Stay tuned until near the end, I’ll share a radical story from Ghana told by my guest, Bernard Appiah. Setup and Introductions I recorded six brief interviews with conference attendees. All but one agreed to let me use their names. Tatiana Nickelson: My name is Tiana Nickelson, and I am from Texas A&M University. I’m a research assistant professor with a scientific interest in post-traumatic stress disorder, focusing on neurobiology and treatment. After the war in Ukraine began, my colleagues and I from Texas A&M and UT Dell (University of Texas) decided to help the Ukrainian people. We regularly travel to Ukraine to teach Ukrainian clinicians how to treat post-traumatic stress disorder. I’m curious how Ukrainians will apply their knowledge and evidence-based treatments to their policies. Bernard Appiah: I am Bernard Appiah, and I often tell people that Appiah is a common last name in Ghana, much like Smith is in the U.S. I was born in rural Ghana. My late father served as a town crier, traveling around the village to share information from the Chief with the community. As a child, I would follow him, though I didn’t realize then that I might also follow in his footsteps. I s

  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 creator, Chester Gould introduced Dick Tracy’s 2-way wrist radio in 1946? A path from nowhere in human consciousness to a figment of someone’s imagination in a cartoon (1946), then opening a mind to possibilities (1964), a concept and prototype (1973), and a product (1983). The Digital phone (1990), just thirty-five years ago. You know the rest Intelligence Let’s talk about intelligence for a minute. I frame human intelligence in several ways. One is that data can lead to information, sometimes to knowledge, and occasionally to wisdom. Another is how I think about health: Physical, Mental, and Spiritual Health. So, perhaps for Intelligence, Physical intelligence is clinical information about the body, Mental intelligence is feelings, and Spiritual intelligence is faith and ethics. So far, Wisdom, Feelings, Faith, and Ethics seem uniquely human. Is AI Understandable? Recently, I visited Eric Pinaud, my dear friend and go-to info tech translator. I needed help paddling through the AI soup. I can confidently discuss my AI experiments, hopes, desires, fears, and outrage. But I couldn’t answer, “What the heck is AI, anyway?” While I understood Eric while we were talking, I found no retrievable home for this new knowledge anywhere in my neural network a month later during podcast production. Hear what I did there. I’m sounding more confident than I am, just like the voice of AI. Question and verify everything. I will interrupt our recorded conversation from time to time to ask questions and report on answers I find from Eric or Claude. Claude isn’t another person in my network. Claude 3.5 Sonnet is an AI assistant computer program designed to interact with humans and help them through natural conversation. Think of it as software that can understand what you write and respond helpfully, like conversing with a knowledgeable person like Eric. Except Claude never sleeps and doesn’t play the harmonica. What is AI? Eric Pinaud: The question of the year or the past few years. Because, in part, these Gen AI tools are available to everybody. As opposed to in the past, technology was only accessible by programmers or techies or whatever else. Gen AI came about as a chatbot, and anybody who can write or listen can use it. And so they can use them better with some understanding of what it does well and not well. And so forth. So, we are going to talk about generative AI, and we’re going to start in the context of just a background of AI. In general, where have we been with AI? [Just a high-level overview of where we are today and what may be next. But some things are not here, and nobody knows exactly how they work, which is pretty crazy. Many people may not consciously realize that AI has been around for a long time. It really started in the fifties, with mathematicians and computer scientists developing algorithms and so forth. Health Hats: The first notable AI development in the 1950s was Arthur Samuel’s checkers program in 1952, which could learn and play the game independently. Another significant milestone was the Logic Theorist, developed in 1955 by Allen Newell and Herbert Simon, which could mimic human problem-solving skills. Narrow AI – One prediction, one decision Until about ten years ago, it was called the Era of Narrow AI. Health Hats: 2010 to 2015. Eric Pinaud: Yeah. Narrow AI refers to AI systems that can do something but are very narrow and specific. And you can only ask them to do something else if it’s language-based. It’s all code-based, and it’s AI. So, artificial intelligence is based on data analysis; AI makes predictions. All AI works like that to various degrees. You give it data. That’s the input. And the output is a prediction. A basic example is the Netflix queue. The input is the stuff that I’ve watched. The output is a recommendation. However, intelligence in Netflix can only do that. It’s very narrow. At least until now, you can’t just talk to Netflix and say, Hey, I want to do this or that. They haven’t quite plugged that in yet. Maybe they will. I don’t know. But basically, the recommendation, Netflix, Spotify, and all those kinds of things are very narrow artificial intelligence. It does one thing based on these parameters that you give it. And then it gives you a prediction. Broad AI – Natural Language Eric Pinaud: Today, we’re in the age that they call Broad AI. So, things like Generative AI can do a little more. Generative AI, obviously, you can talk to it. It knows about a whole bunch of things, and you can ask it about pretty much anything, really. And you’ll get an answer. Sometimes, it’s a good answer, sometimes not so good. AGI, Artificial General Intelligence – Creating Something New Eric Pinaud: The future is what they call AGI, artificial general intelligence. And so, AGI is the holy grail, right? It essentially mimics the human brain’s ability to take a whole bunch of information from a whole bunch of different places and apply those connections to something new that you’ve never seen before. People can do that. Machines today cannot do that. Even Gen AI, even the latest, greatest models today, cannot do that. They cannot infer information that they know from other things to a new problem and apply that. The holy grail is artificial general intelligence, which a lot of people are afraid of because, at that point, it might be better and faster than humans and could have some consequences that nobody really knows about. Some people say that AGI might be here in the next five years. Some people say it’s going to take 30 years. Some people say we’re never going to get there. Nobody knows. AI Examples Eric Pinaud: We already talked about Narrow AI: Pandora and Netflix. Cruise control, I think, is a good one because everybody knows, oh, yeah. Many people know what cruise control is, and it used to be that cruise control; you would just press the button, and it would go at that speed. And at that point, it was not artificial int

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 trust. If it makes sense and feels possible for me, I’ll act and maybe even join. I’m already connected to many extraordinary, trusted communities nationally, internationally, and locally, and I’ll stay connected. However, my priorities, my communities, and the tint of my lenses will likely change. My comfort will be challenged. I’m very nervous about that. I am so privileged. These muscles will need a strengthening program. I’m grateful that during our 50 years together, my wife and I built a house, had a kid at home, cared for dying family, home-schooled, and changed locations and careers several times. Our sons are fine dads, married to strong partners, and live nearby. We could do the unthinkable.  We still can. Those muscles are strong. My Opa survived the Bergen-Belsen concentration camp, and my mother and her parents survived hiding for almost five years. People saved them. I’m grateful for that, too. So, let’s see what happens. Our paths will unfold.  You know where to find me. Comment. Keep in touch. Take care of you and yours. Open yourself to help when you need it. Help can come out of the woodwork. Related episodes from Health Hats https://health-hats.com/pod171/ https://health-hats.com/pod219/ https://health-hats.com/pod181/ 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. [email protected]. 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)