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Health Hats comes home sick from a conference and ends up in a middle seat between two people using mood and menstrual cycle apps. He takes it as a sign he must be exuding something, an odor? He is also angry: how could a nurse know so little about a condition this common? Phee explains that the frustration doesn't go away, that endometriosis can run in families for reasons researchers are still sorting out, and that her generation avoids period tracker apps because they don't trust where the data goes. The episode ends with a question for a scheduled conversation with Laura Marcial, Phee’s mom, and Danny’s friend and collaborator: where do information literacy and women's health meet?

Danny and Phee open their endometriosis series: how they met, Phee’s decade-long journey to diagnosis, and what this disease actually does to the body. Click here to view the verbatim transcript Click here to read the newsletter Summary Danny and Phee Marcial launch their co-produced series on endometriosis by telling the story behind it: Phee’s mom, Danny’s old friend, introduced them after years of talking about hard-to-diagnose conditions in her own family. Phee walks through growing up with unexplained GI and menstrual symptoms that got waved off as IBS, the gender-identity reasons they resisted the diagnosis even when a partner suggested it, and the pelvic floor therapist (Ariel Gallop) whose phone consultation finally pointed them toward surgery. Along the way, Phee describes what endometriosis physically is — tissue growing where it shouldn’t, “a literal web” binding their organs together — and what it’s like to live in a body that seems to work against itself. Danny closes by naming his own blind spots as a white, cisgender man producing this series, and previews Episode 2: a conversation with Ariel Gallop herself. Contents Episode Proem: Know Enough to be Dangerous Health Hats: Welcome to a new Health Hats series, co-produced with Phee Marcial, about endometriosis. Why endometriosis and why co-produced? I’m curious about common diseases such as multiple sclerosis, which are difficult to diagnose without fully understanding their causes and really mess with quality of life. I know enough about endometriosis to be dangerous. Here’s my interpretation of what I’ve read. Endometriosis causes chronic pain and makes it harder to get pregnant. It’s not cancer, but it’s very common. Endometriosis is estimated to affect at least 6.5 million people in the United States—about 11 percent of women ages 15 to 44—though the true burden is difficult to measure because diagnosis is often delayed and some people remain undiagnosed. The federal Office on Women’s Health uses the “more than 6½ million” and “at least 11 percent” estimates.[i] By comparison, nearly 1 million people in the United States are living with a diagnosis of multiple sclerosis (MS), according to a 2019 prevalence study funded by the National MS Society.[ii] Doctors still debate endometriosis because no one fully understands what causes it or how it behaves in the body. Recent research points to a mix of factors: genetics, hormones, inflammation, and immune system quirks. Why co-production? As a master networker and rabid mentor, I consider co-production my superpower. Co-production is more than an interview or a guest appearance. Phee and I will partner to create these episodes—bringing our different experiences, deciding together what matters, shaping the conversation, and sharing responsibility for the result. Sometimes that will look like a mentor–mentee conversation; in later episodes, it will include more joint planning and creative decision-making.[iii] Introducing Phee Marcial Health Hats: Phee, hi. I’m so glad we’re doing this together. Phee Marcial: Me too … Health Hats: I love the idea of co-production, and it’s time I put my money where my mouth is. Thank you for the opportunity to co-produce a series together. Why don’t I spend a couple of minutes and share with our audience how I got to this point of meeting you, having these conversations, and learning more about each other’s experiences and skills. Feel free to interrupt me at any time with any comments or questions. Meeting Each Other People may or may not know that I met you through your mom, Laura. We’ve been friends for a long time, pre-COVID, for many years. We’ve worked together in many ways. It’s not important how. We’ve grown from colleagues to buddies. We’re very interested in each other’s families and our family experiences. Your mom was the first person to introduce me to endometriosis. We had been having a conversation about conditions that are hard to pinpoint, diagnose, and understand, that aren’t clear-cut. And maybe it started with the challenges I had getting diagnosed with MS, but it was more than just MS. Laura started talking about endometriosis, and at that time I had no idea this was a family story she was talking about. She opened my eyes, and I became really interested. Another reason I was interested is that I feel like healthcare and people managing their health are a family affair. It’s a community affair. Phee Marcial: Always Health Hats: People have families; some don’t, but still, it isn’t just the person who has the label. Everyone who touches it has a role. When I listened to your mom talk and educate me, you know, she would send me clips of this or that as we do, and then she suggested you and I meet. Phee Marcial: Nice. She pretty much did the same thing with me. Obviously, I’ve heard about you, Danny, for a long time. Yeah, I kind of grew up hearing your name around the house and sometimes hearing your voice through computer speakers. And yeah, I think I really struggled with no diagnosis and no clear idea of how to move in my very clearly chronically ill, but unnamed, body. I had no idea how to talk about it with people, and no idea how to seek the support I needed, let alone offer support to others. So yeah, when my mom suggested we connect, it was almost a year after my first endometriosis excision surgery. The actual anniversary of that will be tomorrow. So that’s cool. Health Hats: Wow. Mazel tov. Written Off Phee Marcial: Thank you. That gave me time to sit with what I was going through, learn more about it, and process the trauma of needing surgery, undergoing it, and recovering from it. I think this project came at a really good time for me and, I think, at a really important time for endometriosis generally. Yeah. Maybe even the whole spectrum of chronic autoimmune disorders. But yeah, the road was not an easy one, and it doesn’t really look like it’s getting easier any time soon. But it is interesting, and I’ve found it’s definitely worth sharing my story because everybody’s story is different, and yet we are always able to find something in somebody else’s story that connects to us and resonates with us. I was diagnosed with endometriosis last year at the age of 23. I had lived my entire life up to that point with all the hallmark symptoms of endo, including menstrual and gynecologic symptoms, as well as other symptoms I didn’t know were related, mostly gastrointestinal and bowel symptoms. Like many other people with this condition, I often had these symptoms written off as a sensitive gut, IBS, or this or that or the other. Health Hats: What’s IBS? Phee Marcial: Irritable bowel syndrome.[iv] There are kinds of diagnoses, like interstitial cystitis, which is a type of chronic bladder inflammation. And yeah, I had this constellation of symptoms, including menstrual pain, heavy bleeding, bowel problems, like lots of pain with bowel movements, lots of bowel pain in general, lots of upper GI symptoms, acid reflux, chronic nausea. And some psychological symptoms as well, which were very difficult for me to manage. Severe anxiety with somatic expression of that anxiety. Depression, suicidality, and very sensitive emotional responses to medications, particularly hormonal medications. All of this was peppered throughout my childhood. Not Recognizing Myself My current partner suggested that I might have endometriosis, but I didn’t really think about it. I had known people with endo before. But the disease is described with so much emphasis on gynecologic symptoms. I had a difficult time relating to those symptoms, even though I had a lot of them, because I was maybe thinking they weren’t severe enough. Maybe, in my case, it’s not actually that bad, or that dealing with gynecologic symptoms would mean having to, yeah, give up some aspect of my gender identity, which, for my entire pubescence, was still developing, and I didn’t have a chance to get that kind of care in an environment that wasn’t going to automatically assume that I was a woman or that I was becoming a woman. Pelvic Floor Therapy As that all changed and I made it through college and started graduate school, I realized that what I had going on was completely untenable. And that the things I was doing to manage my chronic pain were just not cutting it. So I left school and spent some time in Virginia with my current partner. When I came out to San Diego last year, I decided on a whim to reach out to this pelvic floor therapist. Her practice is five minutes from where I live, so I was like, ‘What the hell, sure.’ I’d only really heard about pelvic floor therapy in passing. I’d seen people post on Reddit about it and stuff like that. I thought, “What could it hurt?” I looked her up and called her office. I soon found out she’s a one-woman show who does everything from scratch and cares for all her patients with almost frightening tenacity. I got on the phone with her later that day for a 30-minute consultation intake call. Is this a good fit? What do you have going on? She does this all the time, as she made clear to me during that phone call. But by the end of it, I mean, it wasn’t by the end of it. It was like five minutes in that she was telling me, “You definitely have endometriosis.” But by the end of it, I was seeing a path toward learning more about what I had going on in a meaningful direction. Not just chasing empty threads. And yeah, that was what started me down my diagnosis journey. I don’t think I would be where I am without that phone call. Health Hats: She’s a physical therapist? Phee Marcial: She’s a physical therapist, yes. I had looked into various gynecologists. I’d been taking shots in the dark about who was actually a specialist and who was just a regular OB doing their best, right? And yeah, I got

Phee Marcial’s artwork opens our co-produced endometriosis series: Armor, Light, and Power. A conversation about art, pain, and process. Click here to view the verbatim transcript Click here to read the newsletter Summary Phee created art; Health Hats was floored. They are well into co-producing a series about endometriosis. Health Hats knows little about endometriosis or manga/anime-adjacent art. Phee knows little about podcasting and video production. Both share vibrant curiosity. What a setup for the series. Hang on tight. [ Episode Proem Health Hats: I’m bursting with excitement. I’m partnering with my new friend, Phee Marcial, to produce a series about Phee’s experience with severe endometriosis. Phee is an artist, storyteller, and expert in the classics. Phee and I have met and recorded seven hours together. We have two interviews scheduled. Phee created an image for our series. This intro is about that image. Readers and viewers can see the image. Listeners can hear it described on the podcast audio. We encourage listeners to watch, and we hope you enjoy this intro as much as we did. Body You Can See Through Health Hats: This is a three-dimensional picture. This person is wearing some kind of wispy clothing you can see through. It has movement. This is an image of a person lunging forward. I was going to say with their chest, but it really isn’t. It’s with their hips. Leading with their hips, with their hair flowing in the background. Phee, what do you see? Armor, Light, and Gore Phee Marcial: Their kind of armor is indistinguishable from their body. The color suggests this armor is some kind of metal. Their right arm and both of their legs below the quads are made of this metal. So is most of their chest and some of their neck. And there’s very heavy contrast light coming from the east, falling along the front of the figure’s body and casting a shadow towards us behind them. And there is some kind of gore dripping from the figure’s right arm onto the ground and staining some of their body. Art in this Body Phee Marcial: I made this piece some time after surgery. Whether it was specifically about the surgery is, I think, irrelevant, because that’s how art feels when you’re living in a body. But I have been developing this character for a long time and wanted to play with light and color a little more. It began, as with most of the works I’m proudest of, with sketching whatever was in my head on paper or on my tablet. Usually, it was completely in black and white. Almost always, it was about how the figure interacts with light and shadow. And the color came later. I didn’t really know at first whether the color would distract from the kind of movement and, yeah, the visceral nature of that movement. The sense of sharpness. It’s always nice when color kind of manifests itself without being asked for. I think that’s one of the most wonderful ways to engage with color, at least for me. Discipline Freedom Phee Marcial: It was very exploratory. I typically work in a super regimented way. I like to be organized. Which, yeah, you may not get from the visual result, but I am typically quite rigid with my process, so it’s nice to see something turn out more freely. That’s something I’ve been noticing more in my work, and I’ve had to adapt to what is available to my physical body and my health at any given moment. And so, it has the opposite effect of what I would expect, which is that it makes me freer rather than more rigid. I think because I want to be able to, it feels more precious, right? The time that I get to spend in that space. So, it’s fewer and further between but more precious. Power! Health Hats: What I like about it, first, is the power. This is a powerful image of a powerful person with an outside and an inside, and you can really feel that the outside and inside are connected; you allow us to see movement, pain, and strength. I’m floored by it. I’m really looking forward to this conversation, to subsequent episodes, and to seeing how it colors our understanding of you and endometriosis. Thank you. Phee Marcial: Thank you. Reflection Health Hats: Are you ready for the first episode? Watch for it in two weeks. What do you see in Phee’s powerful artwork? Do you want to see more? References Phee Marcial’s website: https://hvmator.com/home Inspired by and Grateful to:  Laura Marcial, O and Michelle Horvath, Barby Ingle Related Episodes https://health-hats.com/pod135/ https://health-hats.com/overtreated-untreated-and-mistreated/ 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  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 Resolve, DaVinci AI Art Generator, OpenArt AI Creator Studio 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)

My first-ever post (2012) meets 100 life-sized elephants on Commonwealth Ave. Episode 625. I still haven’t found the whole animal. Click here to view the verbatim transcript Summary I revisit my first-ever blog post, a 2012 story about two strangers in wheelchairs, each certain the other had it worse, as I ride my wheelchair through The Great Elephant Migration’s 100 life-sized sculptures on Boston’s Commonwealth Avenue. Fourteen years and 625 episodes later, the argument holds: best health isn’t fixed, and no one, not the patient, not the organization, not me, ever gets the whole animal. Episode Proem: Orientation On July 24, 2012, over 14 years ago, I published my first post, Best Health: Different Lens, Different Point of View. I wrote it while vacationing on Cape Cod with my family. My son-in-law, Eric Pinaud, helped me set up my website. The episode has stood the test of time. For those of you listening instead of watching (see the video in the show notes), I’m on my trike on Commonwealth Ave, threading through a hundred elephants. They’re not real. They’re not statues either, not exactly — they’re woven. Dried lantana root, an invasive weed, hand-carved by artisans in India’s Nilgiri Hills. Each one modeled after a real elephant those artisans know by name. Calves knee-high, matriarchs taller than my head, tusks close enough to touch. A mile of them, all facing the same direction, as if they’re walking somewhere together. I’m riding at wheelchair height, which means I see knees, trunks, and the undersides of ears before I see a whole animal. One elephant at a time. Never the herd. Episode #1 featured two people with recent disabilities approaching each other in wheelchairs in a rehab hallway. An eighteen-year-old with a gunshot wound, learning to steer with his mouth. A fifty-year-old stroke patient, learning to steer with one hand and a foot, with his wife behind him, dressed up and disgusted. The younger one muttered, “Glad I’m not him.” Neither of them was wrong about what they saw. Neither saw the whole thing. Best health isn’t one thing. Not for you, not for the person next to you, not for the organization billing you for services. Best health moves. It depends on which part of the elephant you’ve got your hand on. So today: the old post, the new elephants, and a hundred and sixty-nine months of me still not knowing the whole shape. This is episode #625. Yikes. 2012, Uncorrected: First Lens This first blog sets the stage. “Best health.” How will we recognize it? For individuals, could it be love, peace of mind, a cure, the ability to perform activities of daily living, or freedom from dis-ease? For organizations, could it be profitability, increased volume, high overall satisfaction, or a high Net Promoter score? Just like anything in the human condition, best health isn’t static. It’s constantly changing. At one point in my life, while working for a landscaping company, I had to complete the final hand raking of topsoil for a brand-new 2-acre rolling lawn. It took 20 hours. Through the lens of that solitary, monotonous gig, I learned that there is no up without a down. Every depression had a corresponding rise. Zen for the 20-year-old! Best implies less than best, always together. While in nursing school, I worked as a rehab aide. I was walking down the hall with an 18-year-old quadriplegic from a gunshot wound to the neck, learning to maneuver his wheelchair with his mouth. Coming the other way was a 50-year-old man suffering from a debilitating stroke, learning to propel his wheelchair with his left hand and foot. Behind the drooling, slouching, struggling man was his beautiful 20-something wife, dressed to the hilt, looking completely disgusted. Out of the corner of his mouth, my young patient muttered, “glad I’m not him.” It’s all relative. Different lens, different point of view. Attaining best health means figuring out the unique goal of the person or organization and working toward that goal collaboratively. I invite you to tell your story. Reflection: Still Best Health, Somehow Fourteen years ago, I used one cane, no forearm crutches, no wheelchair. I was between jobs after being laid off from Boston Children’s Hospital. My oldest grandson was four, and my youngest was one. I was playing bari sax in Herb’s Heard Big Band. I had just begun my relationship with PCORI. Today, I still have best health! Life is good. 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  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 Resolve, DaVinci AI Art Generator, OpenArt AI Creator Studio Inspired by and Grateful to: Eric Pinaud, Jane Sarasohn-Kahn, and my sisters 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)

Pathological optimism meets its cathartic downside. Listen to a 2-minute burst about what sucks in life as I ride my recumbent trike. It’s lame & heartfelt. Click here to view the printable newsletter. More readable than a transcript. Click here to view the verbatim transcript Summary Pathological optimism doesn’t mean things don’t suck. Sometimes you just need a 2-minute burst of complaining. I hate leaking misery in dribs and drabs. I let loose about my sax struggles, MS fatigue, too many pills, old-man prostate, and empty nesting. It’s ridiculous, it’s cathartic, and by the end, my annoyances are down a notch. Episode Proem: The Downside of Pathological Optimism Okay. Good morning. I’m riding my trike, and I’m feeling the need for a 2-minute bitch. I don’t know if I’ve talked to you before; I might have, about the 2-minute bitch. See, one downside of being pathologically optimistic is that it doesn’t mean things still don’t suck. So every once in a while, I just must have a 2-minute bitch. I don’t like it to— I don’t like my miserableness, or unhappiness, or whatever it is to, like, leak out in drips and drabs and— you know, I’d rather have a burst. Sourpuss Kick-off: I Suck at Music. I Quit. So, today—last night, I had a rehearsal. Oh my God. A rehearsal with the Latin band, Lechuga Fresca. Oh, man. You know, right now I’m— I was the only horn there, and I’m often the only horn. And I’m a Bari sax player, and I’m never the only horn. So this is a really new experience for me. Well, it’s not so new; it’s been going on for a year, so. But anyway, I’m— oh man, I just— I just don’t hear the music, or I’m not counting the 1, and I’m just, like, I feel like, you know, there’s like 3 percussionists— no, what were there? Today— yesterday— there was just— last night— there was just 2 percussionists, a keyboard player, and that was it. So it was not enough. Clearly not enough. But it’s stuff I’ve been working on. I’ve just been working on it, and I— I just can’t get it. I just don’t hear it. And then I sort of freeze up, and I— ugh, I just hate that. And I feel like I’m remedial, you know? Like, my band mates were— they’re really nice, and they work with me, and— I don’t know. But anyway, I just— I just have this feeling that I’m going to quit. I’m going to quit this band. This is too much. I’m also playing with a Dixieland band and rehearsing once a week. I still play an hour a day. An hour a day. And I’m just not— I don’t know— not getting better fast enough, I guess. Tired of Tired And I’m tired. I just hate being tired all the time. I wake up in the morning, and I’m exhausted. I hate that. I hate being exhausted. And then, yeah, I don’t sleep that well. I usually say, “Oh, good enough.” And it is good enough. I mean, I do what I do. But I want to have more energy. I don’t know. What would I do with more energy? Anyway, I’m just going to be miserable. Let’s see. What else can I be miserable about? I have cramps. I have cramps. Cramps in my calves. Cramps in my back. Cramps in my shoulders. It’s just annoying. It’s like stuff I’ve got to manage all the time. I don’t want to manage this stuff. I want to be 74 years old and not have pain. Ugh, that sounds ridiculous. Anyway, I’m bitching. Ugh. What else? Well, here I am, riding my trike. I had— oh, my legs really aren’t that strong. I wish they were stronger. And it’s actually my strong right leg that feels weak. I mean, it makes sense. You know? I got MS, but anyway, I’m bitching. And what have I done? Ridden the trike— what, so far? 6 times, maybe, this season. And I don’t feel like I’m getting stronger. I mean, I don’t have to be stronger. I got a lovely ICE trike. It’s a top-of-the-line trike. It’s got great gears. It’s very comfortable to ride. Old White Man with Old White Man Problems Wait a minute. I’m bitching. What else can I bitch about? I wish I wasn’t an old man with prostate issues. How do you like them apples? It’s just annoying. Annoying, annoying, annoying. Oh goodness. What else can I— I’m going to dig deep here. Find something else to bitch about. I don’t have anything else. Ugh. Oh, here. I got another one. I take too many pills. You know? I have to sit there for 20 minutes every Sunday and lay out my pills. What am I doing taking so many pills? Pills for my cholesterol. Pills for my MS. Pills for anemia. Pills for diabetes. Ugh. What have I gotten to? Pills, pills, pills. I might have just run out of steam on that. Let me ride a little longer and see if I can come up with something else to bitch about. Here, I can bitch about having to wait for a red light. How you like that? How you like that, huh? Oh, I didn’t have to wait. Oh well. That was a wasted bitch. Man, it’s a great temperature. Really nice. It’s cloudy, and it’ll probably rain. I could bitch about the rain, even though we need it. I like rain. It’s so much work to be at the top of my game. I want to be at the top of my game all the time. There. There’s another bitch. Man, this is really lame. My lame bitching. All right. I’ll turn it on again if I think of more. Round 2. Losing It All right. I’m a little farther along now, and I have a couple more things to bitch about. One is, I got back on the video because my wife just called to say that some very nice man stopped at the house on his electric bike, bringing my wallet, which I dropped on the bike path here. So, you know, I’m such an idiot. I— I know these pockets suck, and I don’t— I thought I had my wallet in this pocket that has a flap on it, but it’s not really, I guess, a flap that closes. So anyway. There. I’m bitching about being such an idiot, doing stupid things. Empty Nesting I have another thing I thought I had to bitch about. So my—my son, my daughter-in-law, and my grandson moved. They lived upstairs from us for 18 years. We had 18 years with them. And they needed to go. It was enough with the in-laws. But I really miss my son and my grandson. My grandson’s going to college. He’s such a sweetie. And he— he’s gone. And I feel it even more than when my— I guess, when my kids left. I don’t know. Simon, I was glad to see him go. He was just ready to be away from us. He hated me. And then when Ruben left, Mike was still there. When Mike left, that was hard. Really hard. I missed him. I still miss him. He died at 26, God. Anyway. But Leon. I miss Leon. I try to text him almost every day. I’m a pain in the ass, Opa. But he says it’s fine. He likes it. But anyway. There you go. Something else I can feel sorry for myself about. Cycling / Walking Community Pretty nice, isn’t it? Look at this beautiful here. I’m going so slow. It’s a little bit uphill. I think there’s a limit to how strong I can get. There. I got to bitch about that. If I already bitched about that, I don’t like to be repetitive. Anyway. It’s pretty lame. Good morning. (as I pass a cluster of people on the bike path talking). I like seeing people out here. Chatting and exercising. It’s nice being in a community. All right. I’m going to turn it off again. Anyway, I just listened to it. That was it. Reflection: Catharsis. Downgrading Annoyances It was cathartic. It was ridiculous. I hate complaining. Though, when I’m with other people who are gossiping, I gossip. When I’m— when I sour on a relationship or a job, I can be really negative. And when I’m sour or negative for more than a few minutes, I can feel it. All my annoyances escalate a step. It’s my scale. Not 1 to 10, but annoyances. I go from annoying to moderately annoying, to seriously annoying, to catastrophizing, to crippling. So. That was it. A little longer than 2 minutes, but you know, I packed it right in there. Anyway. Thanks for spending this time with me. Later. 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  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 Resolve, DaVinci AI Art Generator, OpenArt AI Creator Studio Inspired by and Grateful to: Peter Lehman, Jeff Harrington, Shel Schenkler 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 Lee

Less, more frequently. Keeping my glorious subscribers up to date on some changes. Click here to view the printable newsletter. More readable than a transcript. Summary 600 blog posts and 250 podcast episodes in. I’m making a change. Production runs 50-60 hours per episode — unsustainable, even though I love every minute. In this trike-ride solo episode, I share what’s pulling my time: co-founding Trust My Own Health (a new startup, weekly one-screen newsletter ), co-leading an endometriosis series with Phee, and playing more baritone sax. The plan going forward: shorter, more frequent Health Hats episodes — 15-minute check-ins instead of long-form deep dives. Recorded live on a trike at 6:30 am, because that’s how I do things. Episode Okay, hello. How you doing? I’m back on my trike. It’s like 65, supposed to be 90 today. Maybe it’s 6:30 in the morning. I’m wearing a long-sleeve shirt just ’cause it’s a little cool, but not too bad. Anyway, good to be out here with you. So let’s see, what am I thinking about? I’m thinking I’m gonna make a change to my podcast. I thought I would take a moment with my most avid longtime followers. Thank you very much. ‘Cause I’ve been overwhelmed by my long-form podcasting. It’s taking 50 to 60 hours to do an episode. It’s just ridiculous. Actually, I enjoy every minute, but it’s too many minutes. And so let me tell you why it’s too many minutes and what my plan is going forward. I’m co-founding a startup, Trust My Own Health. And I will include a link to that ’cause I would love for you all to learn about it and subscribe to yet another Danny thing, a weekly one-screen newsletter. But anyway, this is taking a lot of my time, and I’m really enjoying it. I feel like it’s actually a culmination of my whole career, my whole life in healthcare, and I really wanna put the time in it. We’re in the raising money stage. And I’m actually, for the first time, feeling like we can do this and we’re getting ready to do this, and I wanna put in the time. But I don’t wanna stop doing Health Hats, the podcast, ’cause I love it. So I’m thinking about doing more frequent, like 15-minute things like this, just talking to you about life and health and what’s going on. And then meanwhile, What’s also happening is that I’ve been working with Phee, who is a person. with some very serious endometriosis. And over the past couple of years, my awareness of endometriosis has grown. Phee uses the pronouns they and him. So Phee wants to tell their story, and it’s a great story. I suggested that they co-lead the series about it. We’ve met a few times on Zoom, and we’re in the process of inviting a couple of guests. I see this as a series that will come out when it comes out. But I think I’m gonna– I think we are gonna put it out in half-hour bursts, just to go with the getting used to shorter, more frequent bursts. And actually, I’m spending a lot more time playing music, which I love. So again, it’s squeezing the podcast time, hence the change. I’m delighted to hear what you think of that, and you all have been with me through thick and thin for a lot of years. So this is probably the 600th episode since I started the blog, and we’re at 250 for the podcast. So there you have it. We’ll see you later 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: 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 Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci Resolve, DaVinci AI Art Generator, OpenArt AI Creator Studio Inspired by and Grateful to: Steve Heatherington, Tania Marien, Heidi Frei, Jane Beddall, Matt Neil, Phee Marcial 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)

As a nurse with MS, I’m interviewed about AI’s real role in care: pattern recognition, human-in-the-loop skepticism, and the Three T’s and Two C’s framework. Click here to view the printable newsletter. More readable than a transcript. Click here for a verbatim transcript Summary I sit in the guest chair on Practical AI in Healthcare with Steve Labkoff. I walk through my experience feeding my own symptom logs, lab results, and ten years of clinician notes into an AI LLM: a physical therapy referral I needed and hadn’t scheduled, a medication side effect my neurologist later confirmed, and a rating scale buried in my chart that no one had surfaced. I describe the less impressive side: the four-pound box of unsorted paper my primary care practice mailed me and the 296 pages of unsearchable PDFs I got back from another system in fifteen minutes. Along the way, I lay out my framework for judging any digital health tool, the Three T’s and Two C’s: time, trust, talk, control, and connection, and explain why I insist on keeping humans in the loop even though the research on that is more complicated than people assume. This isn’t a pitch for AI in healthcare. It’s a working nurse and patient’s honest field report. What’s your experience been feeding your own health data into an AI LLM? Tell us in the comments. Episode Transcript Proem I usually ask the questions. This time I’m the guest. I met Drs. Steve Labkoff and Leon Rozenblit a couple of years ago at a DCI Network conference. They host Practical AI in Healthcare, a show I’ve listened to steadily, though it creates more tension for me than any other podcast I keep coming back to. Usually, I jettison podcasts that do that. I stay with this one because I approach AI in healthcare the way I approach best health; I’m an N of one and resist generalizing, while most guests do a fair amount of it. I bristle at most of them, wanting the shades of gray that reflect deep understanding. In four of 33 episodes, the guest has had lived experience: ePatient Dave DeBronkart, Amy Price, Hugo Campos, and me. I invited Steve and Leon to join my virtual Reckoning group, which I’ve hosted since 2019. We give podcasters warm critiques of selected episodes: the kind of feedback you give when you’ve made a hundred mistakes yourself, can spot them quickly in someone else’s cut, and have endless thoughts about production, audience, dissemination, and life. They took the critique well. When Steve later asked me to come on his show to talk about how I use AI, not the theory but the daily grind, I readily agreed. They let me publish it here unchanged, apart from this Proem and Reflection. I struggled to prepare for this conversation. I wanted to wear all my hats, but had to narrow my focus to two. I chose my lived experience and nurse hats. Underneath it all was the question I keep circling back to. Not a cure. Best health, the most function, and Hello, and welcome to this week’s edition of Practical AI in Healthcare. My name is Dr. Steven Lapcoff, and this week I’m actually on my own because my partner, Dr. Leon Rosenblatt, is actually on spring break with his kids, so I am covering for him and he’ll be back in the next week. This week we have a guest who we met at a conference in Boston a few months ago at the Beth Israel at the DCI network. Steven Labkoff: We have Danny van Leeuwen. Danny is a nurse. He has background in giving actual physical care to patients. He actually runs his own podcast called Health Hats, the Podcast, and he’s been using AI in both his personal life and in his professional life very extensively. Also, Danny has a significant medical condition, and I’ll let him explain that in the course of the discussion because it’s with that lens that we got introduced at our patient-centric AI conference, and that’s why we thought it’d be a good idea to have Danny come and have a chat with us. So welcome to the podcast, Danny. How are you today? Health Hats: I’m good. Thank you. Thanks for having me. I appreciate it. Steven Labkoff: So Danny, as you probably have heard because you’ve helped us with our podcast, and for that I want to say thank you. For those who are listening in, Danny runs actually a group that actually helps folks running podcasts improve their podcasts, and he’s had Leon and I on many times to listen to critiques and feedback, and it’s been very, very helpful. Danny, we often start our podcast with asking for folks’ origin stories, like how did they get their cape and their superhero tights. What did you do to get you to this point in your life? And just tell us the background of what brought you here. Health Hats: Oh, thanks. So I’m a child of Holocaust survivors, and my parents– when I was young, my parents were active in the civil rights and fair housing movement in the ’60s. And when I was 16 and I was thinking about the war in Vietnam and worried about getting drafted, I wanted to learn what I could learn about the draft and how I could protect myself and manage. And I went to a church in downtown Detroit, and I went for a session of draft counseling as, you know, a little precocious at 16, and I found it fascinating, and they found me fascinating, and they encouraged me to become a draft counselor. And so I, uh, I actually took their course and became a draft counselor, and what I learned is that you change systems from the inside, not the outside. And I learned how the sausage was made, and that, uh, really pointed me in a direction. The way I got into nursing is really because I didn’t want to cut my hair I had an opportunity for a job at one point, and I could have read water meters or become an aide at the Detroit Psychiatric Institute. And reading water meters paid more, but I didn’t wanna cut my hair, so I got the job as, as nurse’s aide. And while I was there, they introduced me to the idea of going to nursing school, which was amazing. Steven Labkoff: It was more– You got paid more to read meters, water meters, than you did- Health Hats: Yes. Steven Labkoff: That’s unbelievable. Life gives you some real interesting turns and twists, doesn’t it? Health Hats: It does. And I was really fortunate because my first jobs in nursing were in physical rehabilitation and home care. I just happened to be in a place where the Holyoke Visiting Nurses was dying to hire a guy, and I was a brand-new nurse, and they ended up hiring me. And so my first introduction to nursing was not in acute care. It was in home care, and actually, I was the first male public health nurse in Western Massachusetts in 1976. And really, what I learned there was that most healthcare does not occur in the medical system. It occurs outside the medical system. And so when I ended up getting into medical care, it was always so interesting to me that everybody there thought this is where, you know, health happened, which it doesn’t. So over the 20 years of working as a nurse, I’ve worked in, other than the rehab and home care, I’ve worked in the emergency department, I’ve worked in ICU, I worked in pediatrics, behavioral health. And after about 15, 20 years, I shifted from becoming a student of individual health to a student o- of organizational health. And what I mean by that is I got into performance improvement. I led a couple of electronic health record implementations. I had a couple of gigs in the C-suite. I did some consulting. Now, in 2009, I was diagnosed with multiple sclerosis, and when I was diagnosed, I learned that I had had it for 25 years. And since my father died young, he died at 45 when I was 19 of his second heart attack, and so every time I would have some kind of episode, I would get a cardiac workup. And by the time the cardiac workup was done, you know, the episode was over, and this went on two, three, four times a year for a long time. And there was a pattern there, and nobody was connecting the dots for 25 years. That’s very important to me because the pattern of what was going on was in my records for 25 years, but nobody had synthesized it. Steven Labkoff: Yeah, they may have been biased, right? Because of your family history and having these episodes, you know, as a clinician, you get very biased by family history, and that can actually lead you down roads which may not be correct, and it sounds like that’s precisely what happened with you. Health Hats: So I’ve– I wanna bring in the caregiver role because I have been a caregiver for my grandmother, my mother, and a son in their end-of-life journeys. So I’ve been on many sides of very difficult decisions. As you said, that my shtick is health hats, and I’m health hats because I’m a patient, I’m a caregiver, I’m a nurse, I’m an advocate, I’m an informaticist, I’m a podcast host. I wear a lot of hats. And wearing many hats has gotten me a seat at many tables because they can check off boxes. When it was really different to be bringing patients o-on board, I was an easy choice. Uh, I was at the table for technical expert panels at CMS, at National Academy of Medicine, at AHRQ, National Quality Forum, PCORI, Patient-Centered Outcomes Research Institute. But really, I wasn’t really there in it for the seat itself. My goal was always to open seats for people who weren’t there yet Now let’s build the bridge, since this is a podcast about AI, let’s build that little bit of that bridge. So my first, like, serious experience with– Well, I don’t know about my first. I was involved in something that you probably are familiar with, which was the Blue Button Plus program, and my goal in that, I was there both as a patient and as somebody who was working with people with disabilities. I, I was VP of quality for an organization that supported about 40,000 people with disabilities. And my goal for that couple of years of weekly or every other week, I can’t remember

Using AI to track symptoms, weigh medication options, and advocate. Not a cure, a toolkit. An honest, careful path without handing over the wheel. Summary Health Hats reviewed Melissa Reynolds’ book on pregnancy in 2019, and they bonded over the fact that a man had blurbed it. Now she’s on to something new: she’s been figuring out how to use AI to manage a body that’s been hard to live in for two decades. The turning point came in a diagnostic unit, alone in the dark with no idea what would happen next. She opened Claude and asked what the odds were. The answer was enough to let her breathe. What follows is one of the more grounded conversations you’ll hear about patients and AI. She tracks her symptoms in a spreadsheet and asks AI to surface what she’s missing, which is how she learned that her fatigue flares two days before her gut does. She brings research to her GP, who welcomes it and smiles. She nods at the gastroenterologist, who warns her off “that ChatGPT thing.” She’s careful about the politics, careful about the safeguards, and clear that this is for driving your own care, not replacing your clinicians. Her advice for anyone curious is refreshingly un-hyped: know what state you’re in, get a buddy if you’re vulnerable, and tell the tool what you actually need. She calls it a powerful toy, used well. Click here to view the printable newsletter. More readable than a transcript. Contents Podcast episode on YouTube Episode Proem Melissa Reynolds and I bonded when she invited me to review her book on pregnancy, fibromyalgia, and chronic fatigue syndrome in 2019. That still makes us both laugh: a man had written one of the blurbs on the back cover. I thought it was a riot. Melissa thought it made perfect sense because the people who most need to understand what a pregnant body is going through are often the ones standing next to it, trying to help but not quite getting there. Although we follow each other and frequently comment on each other’s posts, our last real conversation was in 2020 about a yoga program she was starting. A few small things from that conversation are still part of my every-other-day stretching and balance routine. I’m drawn to Melissa because she accepts what is, including that hard-to-live-with body, and creates and shares tools for those of us with the same or different diagnoses but similar lived experiences. All for best health. Our friendship has grown virtually, so we can pick up where we left off. This time, I reached out to Melissa after seeing her posts about her exploration of AI. Alone in the dark with a question Health Hats: What lessons are you learning as you use AI? Melissa: It’s funny to say you use AI because it’s hard not to use it now. But I’ve started exploring how AI can support me on my health journey. For a while, I was using it for bits and pieces. Then this gut issue came up. I don’t know if you’ve seen much of the journey, but I suddenly developed severe gut issues. They sent me for stool tests, which I’d never done before, and the results came back abnormally, astronomically high, so they sent me to the hospital. Melissa: They ran all sorts of tests. They rushed me through a colonoscopy, and then I was sitting there on my own in the dark in this hospital room. It’s an ADU unit, so it’s for diagnostic purposes. It’s not a ward. There was no TV, hardly anyone around, and I was quite alone, with no idea what could happen next. Melissa: So, I went into Claude and explained what had happened, and I said I needed to know, statistically, what was likely going on. It talked me through what it could be. That was enough for me to relax and go, okay, that’s cool. Health Hats: Where does it stand now? Melissa: Until a week ago, it looked very likely it was going to be one of those irritable bowel diseases. But right now, we’re completely unclear. I’ve got more specialists to see. But I realized the applications, so I started researching. Deciding to use every tool Melissa: Look, I’ve been sick for 20 years. I’ve been mistreated more than I’ve been well treated, and I’ve lost half my life. A lot of the doctors I saw were, meh. In the last 10 years, I’ve improved my life dramatically, but what upsets me is that I’m still nowhere near normal. That means I was very sick, and most of the doctors I saw were like, meh, even though there were concrete things to treat. They were misdiagnosing me. They were not treating me. Melissa: So I thought I was going to use every tool I had available. I actually told Claude, “Okay, you know my history. We’ve been chatting for a while. Tell me how I can use what you can do better.” The fatigue was signaling two days early Melissa: I do a lot of data analysis in my part-time job, so I thought, let’s get serious about my data analysis. I moved my symptom tracking from a physical book to a spreadsheet. Then I created a prompt where I upload it once a month and say, “Here’s my data. Tell me what you’re noticing that I’m not.” It notices things I don’t. Health Hats: Like what? Melissa: It was the post-exertion malaise flares that I wasn’t quite understanding. Health Hats: Post-exertion malaise. That’s the blowback from overdoing it, the hallmark of ME/CFS and other energy-limiting conditions? Melissa: Yes. It also picked up that when I was having my gut flares, my fatigue would signal a couple of days beforehand. Every time I had a gut flare, my fatigue would worsen beforehand. So, it’s now pretty clear that whatever’s going on with my gut is systemic. It’s part of a larger situation, not just related to my gut. Melissa: The data analysis and the research have been so helpful. I say, do some deep research, and I want you to talk to me about this topic, and it does. But you have to be very clear about what you want it to do. There’s a lot to learn about prompting. It’s very nuanced. Smiling, nodding, and using it anyway Health Hats: How do the clinicians you’re partnering with respond? Are they curious or suspicious? There must be a range of responses. Melissa: It depends. My gastroenterologist keeps saying, “Oh, I hope you’re not using that,” and they always say ChatGPT when they mean AI. So I’m smiling and nodding, but obviously I was. My GP, though, is fantastic. She loves it when I bring her research. She’s engaged. If you’re comfortable with people googling, then AI is just the next step. It’s more efficient than googling. Melissa: And I never go to her and say, “I’ve self-diagnosed myself with this.” It’s more like, “I’ve done some research.” Here’s a practical example. The gastroenterologist suggested a medication, and I don’t feel comfortable taking it. Even though they downplay the interaction with another medication I’m on, I don’t feel comfortable with the overall risk, especially when you’re playing with heart rate and blood pressure. I have low blood pressure and heart rate issues. Melissa: The wonderful thing about AI, compared to what I can do on a hard day, is that it can pull things together. We were talking about this medicine, and it found an alternative, a lower-risk medicine that also supports this other thing. The one thing I don’t want is to end up on loads of medicines and not be sure what’s working. A doctor is surely happy to have me as an informed participant in my care, especially when chronic conditions require patient buy-in. Where the records actually live Health Hats: You’re in New Zealand. I always wonder how the culture and politics around medicine and these tools differ from those here, where it’s a bit of a free-for-all and the guardrails are thin. Melissa: We’re in a very different situation. For a start, we’re a public system, but it’s crumbling. You have the people reliant on it, the people failed by it, and the few who can afford private insurance, which mostly just means you see the same people without being gatekept. We’re very segregated. Each specialty focuses on a single organ. As far as I know, we have one multidisciplinary clinic for long COVID, and it’s in the South Island, so I have no access to it, even though my ME/CFS came on after a viral illness and I’d benefit from exactly that. Melissa: What we do have is one public record that’s stayed with me, and a recent change that allows patients to request any information an organization holds about them. That’s actually how a lot of things changed for me. I got access to my patient portal at 32, and that’s how I found out I’d been diagnosed with chronic fatigue syndrome. No one had told me. They’d just written it in there. Health Hats: As opposed to all the times you were misdiagnosed, with both false positives and false negatives. And pulling it all together is the trick. I have a four-pound box of paper from one office, 500 pages, and 291 pages of PDF from another for three months of visits, all out of order and wildly redundant. So much of it is wrong. You start to realize that, at best, it’s grade-D information, and what I put in my journals and spreadsheets is probably the most accurate, which a doctor would never agree to. Melissa: It’s the same here. The onus is still on the patient to gather it all and then use it. That’s a whole other thing, and it’s something I’ve always struggled with. A very powerful toy Health Hats: What words of wisdom do you have for people who are using these tools? Do you want to encourage them or caution them? Melissa: First, think about what state you’re in. If you’re a bit vulnerable, don’t feel confident with technology, or are unsure about any of it, then seek guidance. Have a buddy or a mentor to do it with. Melissa: If you’re like me, data-oriented and logical, deep research is great. But if you’re someone who needs minimal information and more would fry your nervous s

From a 10-bed lying-in hospital to Handel’s Messiah, the Rotunda Maternity Hospital has operated continuously for 281 years. A Nurses’ Week story. Summary Across the street from Danny’s Dublin hotel stood a large white institutional building with no signage. It turned out to be the Rotunda Hospital — the oldest continuously operating maternity hospital in the world, delivering babies in the same building since December 8th, 1757. Surgeon Bartholomew Mosse founded it after losing his wife and child in childbirth, trained as a midwife in Paris at a time when physicians were penalized for practicing midwifery, and returned to Dublin determined to build something that didn’t yet exist. The first version had 10 beds and delivered 190 babies in its first year, with one maternal death. Unable to raise money for a larger hospital — no one wanted to fund poor women’s care — Mosse attended the world premiere of Handel’s Messiah in Dublin in 1742 and was inspired. He turned the future hospital site into a pleasure garden with orchestras, dances, and theater to attract wealthy donors. He was later imprisoned for debt, escaped through a castle window in Wales, hid in the mountains for three weeks, and died exhausted and broke in 1759, less than two years after the new hospital opened. Sara E. Hampson, one of Florence Nightingale’s original nurses, became the hospital’s first female superintendent in 1891 — a thread that ties Nurses Week directly to this building, Danny almost walked past. Click here to view the printable newsletter. More readable than a transcript. Contents Podcast episode on YouTube Episode Proem: No Signage, No Appointment, No Problem Hello. Welcome to 2026 Nurses Week, May 6th through 12th. I’m very proud to be a nurse. I’ve been a nurse for 50 years. And my grandson’s going to nursing school next year. He’s graduating as a senior and will attend Loyola University in Chicago for its nursing program. I’m very proud. I want to tell you a story about one of the most significant things that happened during our trip to Ireland a couple of weeks ago. We were staying in the north-central city of Dublin, Ireland. Across the street, I saw a big white institutional facade with no signage. It looked like the side of the building. Next to it, on its right, was a dome with a more modern sign that read “Ambassador”. So, I went into the hotel and asked, “So what’s this building?” And they didn’t know. I looked it up, and it turned out to be the Rotunda Hospital. The Rotunda Hospital is the oldest freestanding maternity hospital in the world. Midwifery Was Scandalous. He Did It Anyway. Now let me see. I’ve got some notes here. The hospital was founded in 1745 by a man named Bartholomew Mosse, M-O-S-S-E. He was a certified surgeon. His wife and child died in childbirth. After this tragedy, he left Ireland to serve as a doctor with the British Army. While he was away, he received midwifery training at a hospital in Paris and obtained his midwifery license, which was unusual. In fact, fellows of the Royal College of Physicians were even penalized if they practiced midwifery. But Mosse wanted to change that. So, he built this small place, 10 beds, that… Let’s see, when did it open? I guess it opened in 1745. Mosse’s ambition was to build a dedicated maternity hospital in Dublin to provide medical care and shelter to the city’s penniless mothers. This came after he encountered unspeakable conditions during his practice, particularly in the aftermath of the 1739 famine. So he established this 10-bed hospital. It was in a small theater called the New Booth Theatre. It says here that it was the first lying-in hospital of its kind in the world. It had only 10 beds, but in its first year, 190 babies were born, and just one mother died. But obviously, they couldn’t meet demand with 10 beds. When No One Funds Poor Mothers, Try Dancing Mosse tried to raise money to build a larger hospital, but nobody really wanted to give money to poor women. So he happened to attend the world premiere of Handel’s Messiah on April 13, 1742. While he was there, he was inspired to raise money by entertaining the wealthy. Somebody sent me a picture of the Handel statue that’s in front of the theater where the premiere was, which I thought would be interesting. According to my research, on the evening of April 13th, 1742, Handel conducted the world premiere of his Messiah on Dublin’s Fishamble Street, and Mosse was present. Historians suggest that this moment crystallized Mosse’s idea of using high-society entertainment to fund a hospital for the poor. So Mosse turned the proposed hospital site into a pleasure garden with a live orchestra, theatrical performances, and dances in a coffee house, marrying philanthropy with frivolity to reach the wealthy. Debt, Daring Escape, Death Here’s a little interesting tidbit. Lotteries nearly destroyed Dr. Mosse. Before he was able to return to Ireland, he was arrested and charged with being 200 pounds in debt, and he’s thought to have been imprisoned in Beaumaris Castle in Anglesey, Wales. The story was that he managed to escape through a window and hid in the Welsh mountains for three weeks before reaching Ireland. He then vindicated himself by publishing his receipts and lottery accounts, whatever. But less than a year after the hospital opened, he was taken seriously ill, exhausted, heavily in debt, and petrified about the prospect of arrest and imprisonment. He died on February 16th, 1759. Fix the Air, Save the Babies. Then and Now. Around 1781, when the hospital was poorly ventilated and every sixth child died within nine days of birth, they realized the problem was poor ventilation. Ventilation was improved, and mortality dropped to 1 in 20 over the following five years. They’re also planning to celebrate their millionth birth in 2026. It’s just amazing. I met a saleswoman in a sweater store who asked where we went in Dublin. When I told her about the Rotunda Hospital, she said she had a difficult pregnancy and birth without insurance. She received care at the Rotunda Hospital, with her baby in neonatal intensive care for three weeks and herself as an inpatient for two weeks. Awesome care! So, when we were there, I, an old white guy in a wheelchair, motored into the Rotunda Hospital and stopped at the registration desk to ask if I could speak with someone. I had not made an appointment. I was leaving the next day. Very nice people. I tried to get hold of people in their library, research, and marketing, but they were busy, of course. Oldest? It’s Relative. I’m really impressed by the idea of being the world’s longest-operating specialist hospital. I was trying to get some perspective on that, so I looked up the oldest continuously operating hospitals, and here’s what I learned. I learned that in the United States, the oldest continuously operating hospital is Bellevue Hospital in New York City, which opened in 1736 as a six-bed infirmary.[1] So, it began as a haven for the indigent and is still a major public hospital on the East Side of Manhattan. It opened nine years before Mosse opened his first lying-in hospital. The other long-running hospital is the Pennsylvania Hospital in Philadelphia[2], established in 1751 by Benjamin Franklin and Dr. Thomas Bond. It’s still operational as part of the University of Pennsylvania Health System. The oldest hospital is the Hôtel-Dieu in Paris[3], which officially opened in 650 AD, and that’s the hospital where Mosse became a midwife. There’s St. Bartholomew’s Hospital in London, founded in 1123[4]. And there’s the Hospital de Jesús Nazareno in Mexico City, opened in 1524. But really, the Rotunda is the oldest maternity-only specialist hospital, continuously operating in the world, which is a more specific and arguably more impressive claim than the general acute care hospitals Bellevue and Hôtel-Dieu, which have both moved buildings, changed missions, and been rebuilt. The Rotunda has been delivering babies in the same building since December 8th, 1757. That’s really something. Reflection: Nightingale Was Here Too So, let’s bring this back to Nurses Day and to Florence Nightingale. Interestingly, Sara E. Hampson was one of the original Nightingale nurses and the first lady superintendent of the Rotunda Hospital in 1891. So yay, nursing. Yay, history. I’m really looking forward to exploring more of this amazing hospital in Dublin. I wonder who was in charge all these years, and how it survived past Mosse and through those first decade or first few years? And then, how did the Rotunda Hospital survive war, famine, pandemics, and technological change? What research occurred there? Is there a diaspora of Rotunda alumni? Anyway, more to come. Thanks. Referenced in episode [1] By Harper’s Weekly – Harper’s Weekly, Public Domain, https://commons.wikimedia.org/w/index.php?curid=6014479 [2] William Strickland (1788-1854) Engraver: Samuel Seymour (1796-1823), Public domain, via Wikimedia Commons [3] I, Clio, CC BY-SA 3.0 , via Wikimedia Commons [4] See page for author, CC BY 4.0 , via Wikimedia Commons Are you part of the Rotunda Hospital diaspora? Find me at [email protected]. Tell me your version. 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, Gramm

Participatory governance in healthcare means asking the right people the right questions. Three stories where listening as leadership changed everything. Summary This episode is about listening as leadership — the gap between where knowledge lives and where decisions get made, and what it costs when we pretend that gap doesn’t exist. Three stories from my career as a nurse manager, quality director, and VP — three moments where participatory governance in healthcare produced the same result: a no to the status quo. Not a radical no. An obvious one. Obvious, that is, once someone finally asked the people living inside the system. Topics covered: Open visiting hours in the ICU — and what happened when staff pushed back Seven therapy visits, no prior authorization required — and what happened when the company was acquired A disability services resident on a board of directors — and the simple fix that improved every patient experience metric Why participatory governance is the fastest, cheapest diagnostic tool most health system leaders never use The honest difference between patient advisory boards and actually sharing power with patients What patient-centered care looks like when it moves beyond consultation into real shared decision making Click here to view the printable newsletter. More readable than a transcript. Contents Podcast episode on YouTube Episode Proem I’ve spent most of my career in institutions, hospitals, managed care companies, and disability services agencies. These are large, slow-moving systems with their own inertia, logic, and knack for designing processes that work best for billing, and not so well for those receiving or providing services. I should know. I’ve been inside these systems as a clinician, boss, consultant, caregiver, and patient. The boldest changes I was part of didn’t come from a consultant’s report. They didn’t come from a board retreat or a leaders’ strategic planning day off-site — though, Lord knows, I’ve sat through plenty of those. They came from the moment when someone, usually someone with very little institutional power, said: This doesn’t work. It’s hurting us. The hardest part wasn’t hearing that. The hardest part was finding the gumption to act. Institutions are good at explaining why things are the way they are. They have binders of policies for that. My secret as a consultant was embarrassingly simple: the people who hired me already had the answers they needed. The nurse who’d been there fifteen years knew. The member who couldn’t get her calls returned knew. I sought them out, listened, and translated their words into a PowerPoint that the boardroom could hear. I want to tell you about three times I got it right. Three moments when the change that mattered was a no. No to visiting hours that kept families from the people they loved. No to a prior authorization process that treated patients and clinicians like suspects and required an army to administer that suspicion. No to a system that let care aides disappear from people’s lives without warning or goodbye, as if the people whose lives they were in didn’t deserve a heads-up. None of these nos were mine originally. I heard them from a family pacing a waiting room, from a member who couldn’t get the help she needed, and from a man with a disability who sat on our board and told us, plainly, what it felt like to wake up one day to find that someone essential to his life was simply gone. Participatory governance sounds like it belongs in a policy manual, right between stakeholder alignment and learning organization. When participatory governance works, it’s permission. Permission for the people living and working within a system to tell the truth about it. And the willingness, on the part of whoever’s in charge, to let that truth land. Even when it’s inconvenient. Especially then. Part 1: ICU Doors Open My first experience as a boss was as an ICU nurse manager, a job I got, I should mention, without ever having worked in an ICU or having been a boss. A story for another day. The honeymoon was short. Strictly prescribed visiting hours, ninety minutes in the morning, ninety in the evening, were leaving families miserable. I could see it. They could feel it. In collaboration with my bosses, the ICU medical director, and the chief nurse, I eliminated visiting-hour limits entirely. My staff, who had recruited me for the role, now deeply regretted it. I hadn’t consulted them or thought through the workflow implications. They were furious, and they weren’t wrong to be. But we kept the visiting hours open. Over time, something shifted. I learned how to be a boss. Nurses learned to include families in care and treatment. Patients and families arrived home better prepared. Physicians, for their part, didn’t much care either way. The lesson I learned: this was a story about control. Mine, the nurses’, and ultimately the families’. We eventually set up an informal patient and family advisory group, not because I had planned to, but because we needed them in the room. Part 2: Seven Visits, No Questions Asked My job title was Director of Quality at a behavioral health managed care company. If you’ve spent any time in managed care, you know what that means: Director of Trying to Get an A+ in Every Measure, Whether It Has Meaning or Not. Prior authorization was the centerpiece. A member needs therapy. Their provider submits a request. Someone on our end reviews it, approves or denies it, requests more information, waits, and follows up. The member waits. The provider waits. And somewhere in all that waiting, the person who needed help either got it, gave up, or got worse. I inherited this process. I did not invent it. My boss and I set up an advisory group with members on one side and providers on the other. We asked about their experiences with our company. They were not subtle. Members said the pre-auth process made them feel they had to prove they deserved care. Providers said the company’s default assumption was that they were lying. Neither response was a ringing endorsement. So, we experimented: seven visits, upon request. No authorization required. If a member or their provider asks, they get them. No forms, no review, no waiting. The result: outcomes held. Members received care faster. Providers stopped spending half their administrative time on the phone with us. And our call center, the engine room of the prior authorization machine, grew quieter. Then quieter still. A substantial portion of our staff spent all day managing a process that, in large part, was designed to manage itself. Strip it out, and you didn’t need nearly as many people to run it. The bureaucracy wasn’t protecting anyone. It was the cost. We had real data. Member satisfaction trended up. Providers, for the first time in recent memory, said something positive about the company. The advisory group had surfaced a truth that no quality metric had found, because no quality metric had asked the right people the right question. Then the company was acquired. New owners, new priorities, no appetite for any of this. The program was terminated, and the advisory group disbanded. I can only assume the prior authorization process resumed its proud tradition of making everyone miserable in the name of oversight. I learned that participatory governance surfaces the truth faster than most quality improvement methodologies I’ve encountered. But institutions don’t always want the truth. Sometimes they want the process. The process is familiar. It distributes responsibility. It means nobody has to decide. The advisory group uncovered a truth. It turned out that the people who bought the company got a veto. Part 3: The Right to Say Goodbye There’s a particular kind of organizational meeting where everyone knows something is wrong, the data is right there on the slides, and somehow the conversation goes nowhere. Lots of nodding. Lots of concern. Lots of commitment to further analysis. I worked as VP of Quality at an organization supporting forty thousand people with disabilities, many of them living in group homes, relying on personal care aides for the most intimate parts of daily life. Getting dressed. Eating. Toileting. Moving through the world. At my first Board meeting, we reviewed satisfaction survey results, which were poor. They were not nuanced, requiring careful interpretation. They told us something was bad. And we were doing what organizations do: analyzing, discussing, and scheduling follow-up meetings to review the analysis. We were not asking the people who lived there. The agency was committed to resident/patient participation in governance committees, including the Board; in this case, a resident of one of our group homes served on the Board. Not as a symbol. As a Board member. At one of these meetings, in the middle of what was shaping up to be another productive session of collective concern, he said something that stopped the room. He said: People leave without warning. A personal care aide, someone who helps you start each day, who knows how you take your coffee, which jokes make you laugh, and how you like your blanket folded, is just gone one morning. No notice. No goodbye. Someone new shows up, and you’re expected to adjust. He said it plainly, not as an accusation but as a fact. He apparently assumed, incorrectly, that we already knew. We didn’t. Or rather, someone knew. The people living in the homes knew. The aides probably knew. It just hadn’t made it into the meeting room until he put it there. The fix was insultingly simple. When an aide left, for any reason, residents would be told in advance. A chance to say goodbye. A proper introduction to whoever came next, rather than a key, an address, and good luck. That was the intervention. Advance notice, a goodbye, a hello — the basic courtesies w

Health Hats walks & floats through ancient Maya caves in Belize with forearm crutches, teamwork, trust, and shared decision-making every step of the way. Watch this episode on YouTube. Audio is published, but not the same Podcast episode on YouTube Summary What does it take to go cave tubing in Belize when you use forearm crutches and have no electric wheelchair? For Danny van Leeuwen, it takes the 3 T's: Time (a half-mile walk), Trust (in guides and companions), and Talk (real-time decisions about stairs vs. river crossings). HHP245 is a first-person GoPro video of Danny floating through the sacred Caves Branch River — ancient Maya ceremonial grounds — with his wife and friend Linda. It's part adventure, part health advocacy, and part proof that with the right team, you can push your capabilities further than you thought. Click here to view the printable newsletter with images. More readable than a transcript. Contents 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   Inspired by and Grateful to: Mike and Linda DeRosa, Ann Boland, Ruben, David, and all our guides and helpers Photo Credits for Videos All by Danny van Leeuwen using GoPro10  Referenced in episode Nohoch Che'en Caves, Branch Archeological Reserve, Episode Proem I delight in pushing the boundaries of my capabilities. In Belize, floating in a tube through caves and snorkeling stretched me. How can tubing stretch anything? It’s passive floating. The event included a mile-long walk to the cave entrance – relatively flat with some steps and wading across the river, a mere six-inches deep. No electric wheelchair, just my forearm crutches. Our guide and my compatriots shared in the decision-making and assisted me. This video episode was taken with a GoPro camera hanging around my neck. Watch the video. Reading will not give you the flavor. Narrative Let me tell you a little bit about where we are what you'll see. Excuse me, as I will be certainly butchering some of the names of stuff. So where we are is Nohoch Che'en Caves, Branch Archeological Reserve, also called the Caves Branch River. It's in the Cayo District, and districts are like provinces or states. It's by far the most famous cave tubing destination in Belize and one of the most unique in the world. So this was sacred to the ancient Maya. They were considered portal to Xibalba, the Maya underworld. This wasn't just mythology. The Maya actively used these caves for religious rituals and ceremonies, particularly during times of drought when they needed to communicate with the rain God, chaac. I don't know. Archeologists have found ceramic offerings, jade artifacts and human remains inside; evidence of sacrificial rights dating back over 2000 years. The caves were largely forgotten after the Maya civilization declined and weren't widely known to the outside world until the 1980s and nineties when the Belizean guides and explorers began documenting them and it became a active tourist destination in the early two thousands. So the Caves Branch River flows through a network of limestone caves carved out over millions of years. The system I floated on. Is part of a much larger Karst landscape riddled with interconnected caves. Some of them still unexplored. Pretty amazing, huh? Reflection That was it. Fifteen minutes of about an hour total time and 30 minutes of recording. I hope it gives you a flavor of what we did. It was awesome. I will be producing a couple more videos from Belize over the next few months. The next video will be of the Mayan ruins, then making tortillas and tamales, and then, we’ll see. Related episodes from Health Hats https://health-hats.com/pod223/ https://health-hats.com/pod191/ https://health-hats.com/pod164/ 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)

Former Nike exec Mark Hochgesang interviews Danny on Heavy Hitter Sports Podcast about MS & being an adaptive athlete. Just back from Belize! Training works. Summary My friend Mark Hochgesang, former Nike exec and host of Heavy Hitter Sports, recently interviewed me. While I usually wear my life on my sleeve on Health Hats, this conversation revealed something different—how I think about myself as an adaptive athlete. Phil Knight's mantra: "If you have a body, you're an athlete." I never thought of it that way until Mark helped me see it. Training to travel? That's athletic training. Loading a 60-pound wheelchair into an SUV? Strength work. Walking 3,500 steps a day with MS? Competition with myself. Here's what we covered: 🧠 The Swiss cheese brain scan - My MS diagnosis story (turns out I'd had it for 25 years) 🎷 The baritone saxophone - My neurologist's #1 prescription for MS. Music creates new neural pathways. 🚶 The 3,500-step goal - Why movement is non-negotiable, even with foot drop and proprioception issues 💪 The "every other day" rule - Setting yourself up for success (stretching, balance, upper body work, squats) 😤 The two-minute bitch - No "happy horseshit" allowed. Life with MS sucks sometimes. Two minutes to vent, then move forward. 🌍 Training to travel - From 70 miles of Camino de Santiago to just returning from Belize (videos coming!) 👨‍👩‍👦 The team - Wife (OT), sons, grandkids (my scouts!), medical team, massage therapists, the Cuban van driver who didn't speak English 🎯 The win - People understanding that disability takes many forms and asking "How can I help you?" instead of aggressively helping 💡 The legacy - Being remembered as "the cool Opa" The biggest lesson? Build a team. You can't do this shit alone. Click here to view the printable newsletter with images. More readable than a transcript. Contents 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 Inspired by and Grateful to: my entire team Photo Credits for Videos Featured Image by Mark Hochgesang Referenced in episode Heavy Hitter Sports Episode Proem Mark Hochgesang, a former Nike exec and my podcasting buddy, recently hosted me on his podcast, Heavy Hitter Sports. You all know I wear my life on my sleeve and take any opportunity to talk about myself. I’m sharing this episode of Mark’s because it reveals a different story of my abilities and self-image, which I now tell through my collaboration with Mark and his deep understanding of sports. Redefining Athletic Performance Mark: Welcome to Season 4 of Heavy Hitter Sports, where we talk to inspirational figures in the world of sports. Athletes come in many shapes and sizes, and not all heroes perform on a big stage. Today's episode is a bit different and one that I've long been looking forward to. It's focused on how we adapt to unplanned life changes and adversity, then train, compete, and battle to win on our own terms. My guest is a good friend and fellow podcaster, Danny van Leeuwen. Danny is a former nurse, healthcare executive, musician, traveler, and a man who has lived with multiple sclerosis for many years. This is not a tale about limitations or illness. It's a story about focus, fortitude, optimism, preparation, and team-building to live an amazing life. Danny's story as an adaptive athlete challenges us to rethink what strength, toughness, and success look like. If you care about maintaining optimal health, sharpening your mindset, and winning the long game, this is the episode for you. Danny, welcome, my good friend. I'm looking forward to catching up and talking to you about some of the challenges that have been thrown your direction in life. And I'd like to open by getting your thoughts on this Nike mantra first uttered by Phil Knight, who said, "If you have a body, you're an athlete”. Your thoughts on that sentiment? Danny: I never really thought about that until I met you, listened to your podcast, and delved into them. And it made me think about when I was getting ready to travel. When I put it in the frame that I was training to travel somewhere, then I started thinking, oh, that's what Mark is talking about. Then it made me think. So never before. That was like the first time. I like it. I really like it, actually. It's empowering. Nerd to Athlete Mark: Now, as a child, when you were growing up, you probably spent more time in libraries than you did on ball fields, correct? Danny: I did. I was a total nerd. I had two left feet. I remember the day I learned to skip. I just thought it was one of the coolest moments of my life. Oh, I can do this. It's interesting. No matter how old we are, Mark: We can always remember skipping. But at some point in our lives, we skip for the last time, and we never know when that's going to be. And then you can never get it back. Yes. You recently said something I absolutely love: you like feeling like an athlete. What does being an athlete mean to you today? Danny: What it means is my goal is optimal functioning. And when I say functioning, it means physical, mental, and spiritual. Like most people, I have things beyond my control, like my genetics, my situation, and my culture. And when I look at an athlete, and I think, oh my goodness, what did they do that they're at a peak for performance, whether it involves a ball or whether it involves something else? It's amazing, and it's empowering. Now, there's a downside. When I look at athletes, I also think they're pushing their limit. And every game, you see somebody who's past their limit, and they have an injury. And so for me, I think of it a little differently in that I don't want to have the injury. Like for me, the biggest danger is falling. And so I want to fall as infrequently as possible. I don't want to hurt myself. So that might be a little bit different than an athlete. Coaching Mark: That's interesting because when we were together a couple months back, when you were in Portland here for a conference, and I took you to the Blazers game, they were playing the Warriors and Steph Curry. Now, Steph, although he started in college as injury-prone, has had a really injury-free pro career. And that's been all the difference for him. But I think every top-flight athlete fears the moment where it ends because an Achilles rips, a hamstring, whatever the injury might be, it's ever-present. You can't be thinking about it 100% of the time, or hopefully at all. There are those moments where a career ends. Danny: The frame of being an athlete is very empowering. It feels like it gives me agency, control. I can train. I can modify. I can be coached. My wife's an OT, an occupational therapist, and she is always thinking about being sure there are no throw rugs in the house. She put bars up in the bathroom. You get people who help you, coach you, and help modify stuff. Competing Mark: Your comments also make me think athletes are always competing. And as a man with multiple sclerosis, you're always competing too in your own way. How does that competitive fire show up daily for you? Danny: That's a good question. I am both like so not competitive, but I'm very competitive with myself. Like, why can't I go on that trail? Okay, now what is it going to take for me to go in my wheelchair on that trail? Okay, I got my wheelchair and my crutches. Okay, I can go this far with the chair, then get out of it, and go up those steps or across that bridge with all these gaps in the boards. Mark: That makes me think, too, that athletes, to be truly confident, have to prepare to the best of their ability. And that's what you're talking about, right? Calculated Risks Danny: Yeah, I believe in calculated risks, but they're calculated. I'm still not going to go across the street in my chair without looking both ways. And I can see that, with the people I'm with, their comfort with my sense of risk really varies over time. My wife would just be freaking out over some of the stuff I do. And I have to manage that too. Mark: So let's flashback in time to 2009 and the moment when you're first diagnosed with MS. Can you talk about that moment when you get your call from the primary physician and then later the neurologist? What went through your mind at that moment? Diagnosis - Finally Danny: I had been feeling that something was wrong. We had just moved to Boston, and I was working at Boston Children's. I had found a really good primary care physician. I kept saying to her, "Something is wrong." She took me seriously and sent me to different specialists. Mostly, they just said, "Nah, nah, nah." Finally, she said, "Oh, screw it. Let's just get a brain scan." She ordered the brain scan, not the neurologists or the whatever specialists. It was obvious that I had it. So she called and said, "OK, I need you to sit down." I had this office that was like a closet with four people in it. There was no privacy. But we were right by a garden. So I went out in the garden and sat on a bench. She said, "OK, here's what I found." At first, I was so relieved. Like, it's a diagnosis. It made sense. And then I'm a sort of delayed-reaction kind of person with bad news. And then I was like, "Oh, my God, what does this mean?" And my wife was like, "Oh, she was pretty upset." But I'm more of an, "OK, get over it....

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 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 the annoyances of MS, that brings it down to a five. So, how are you doing? Five out of ten is best health.  I lost 50 pounds this year after a Type II Diabetes diagnosis. Mobility remains steady,...

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 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. That’s a concrete example we can point to. And I think that we, as a society, have many points where we could potentially connect. But recent research shows that's not actually the case. Instead, we're becoming more disconnected and finding it harder to connect. I believe that for our communities, even knowing how to engage with programs like what Kirk is working on is difficult. Or even in my position, trying to identify programs that truly want to do right, take that pause, and make sure they aim to be equitable—particularly on the funder side—and not just engage in transactions or give less generously than they intend if they'

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 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 mobile health applications. All-or-Nothing Privacy: The Sledgehammer Approach Fabienne: And all of those have slightly different challenges in how that information is shared and safeguarded within those applications. And then also how individuals can provide preferences for which information is shared. And you're exactly right: the technical part of this is just as complex as the nuances of the policies, the preferences, the regulations, et cetera. And in some cases, there just isn't quite the granularity in information segmentation we need to really provide the appropriate preferences for patients and families. So sometimes it's a very blunt object. We say this note contains confidential information, so no part of it will be shared anywhere. And we lose a lot of critical, valuable information that we would like to share with families and other providers, or that could be beneficial to an app. It's a very complex challenge. You're exactly right. Health Hats: Gimme an example. I'm hearing what you say. Because people often talk about everything,...