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Health Hats, the Podcast

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by Danny van Leeuwen, Health Hats

5.0(21 reviews)

125 episodes

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Learning with people on the journey toward best health.

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Recent Episodes

June 14, 2026

Alone in a Dark Hospital Room, She Asked Claude

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. <div> <div class="border-borderMain/50 ring-borderMain/50 divide-borderMain/50 dark:divide-borderMainDark/50 dark:ring-borderMainDark/50 dark:border-borderMainDark/50 bg-transparent"> <div class="relative default font-sans text-base text-textMain dark:text-textMainDark selection:bg-super/50 selection:text-textMain dark:selection:bg-superDuper/10 dark:selection:text-superDark"> <div class="min-w-0 break-words [word-break:break-word]"> <div dir="auto"> <div class="prose dark:prose-invert inline leading-normal break-words min-w-0 [word-break:break-word]"> <a href="https://health-hats.com/wp-content/uploads/2026/06/HHP249-Melissa-Reynolds-20260613.pdf" target="_blank" rel="noopener">Click here to view the printable </a>newsletter. More readable than a transcript. Contents </div> </div> </div> </div> </div> </div> Podcast episode on YouTube <iframe id="_ytid_53043" width="1080" height="608" data-origwidth="1080" data-origheight="608" src="https://www.youtube.com/embed/Io0EQyjwp7g?enablejsapi=1&autoplay=0&cc_load_policy=0&cc_lang_pref=&iv_load_policy=1&loop=0&rel=1&fs=1&playsinline=0&autohide=2&theme=dark&color=red&controls=1&disablekb=0&" class="__youtube_prefs__ no-lazyload" title="YouTube player" allow="fullscreen; accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen data-no-lazy="1" data-skipgform_ajax_framebjll=""></iframe> <h2>Episode</h2> <h3><a name="_Toc232333770"></a>Proem</h3> Melissa Reynolds and I bonded when she invited me to review her <a href="https://www.amazon.com/Pregnancy-Fibromyalgia-Definitive-Melissa-Reynolds-ebook/dp/B078BQL9NM?ref_=saga_dp_bnx_dsk_dp" target="_blank" rel="noopener">book on pregnancy, fibromyalgia, and chronic fatigue syndrome</a> 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 <a href="https://www.subscribepage.com/yogaforthechroniclife" target="_blank" rel="noopener">yoga program</a> 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 <a href="https://www.amazon.com/Fibromyalgia-Wont-Win-Learning-Collection-ebook/dp/B09YQKRVN7" target="_blank" rel="noopener">she accepts what is</a>, 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. <h3><a name="_Toc232333771"></a>Alone in the dark with a question</h3> 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. <h3><a name="_Toc232333772"></a>Deciding to use every tool</h3> 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.” <h3><a name="_Toc232333773"></a>The fatigue was signaling two days early</h3> 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. <h3><a name="_Toc232333774"></a>Smiling, nodding, and using it anyway</h3> 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. <h3><a name="_Toc232333775"></a>Where the records actually live</h3> Health Hats: You’re in <a style="cursor: pointer !important; user-select: none !important;" href="https://www.cab.org.nz/article/KB00001547" target="_blank" rel="noopener">New Zealand</a>. 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. <h3><a name="_Toc232333776"></a>A very powerful toy</h3> 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 system, then either don’t do it, ask someone to do it for you, or tell the AI, “I don’t need lots of detail; give me the three key points I can take away.” You can always guide it. Many people use it like they’re talking to someone, which can be useful when you’re working through things. But if you can prompt it well, you’ll get what you need. Melissa: That’s why I’m writing a series of articles. I want to guide people so they can focus on one thing, like how to use their data to get good analysis, because it’s a lot. First, you’ve got to learn how to prompt, then what to put in, then how it works. My articles are trying to make it more accessible. It’s always us, the people who are chronically ill, who are least able to jump on opportunities and make the most of them, and we’re the ones who need it most. But if you’re worried about it or opposed to it, leave it. Health Hats: I’m not a black-and-white person; I’m more nuanced. It helps with some things but not others. One thing I’m struggling with is that it gives me too much to share, and I want to share all that depth. Maybe it’s useful for me, but not for other people. So, I’m learning to set limits. My audience has three minutes or 500 words. Then I can ask more questions. It’s amazing. It’s a toy, in a way. A very powerful toy. Melissa: Thank you so much. I can’t believe it’s been so long. Health Hats: I know. Do we need to make an appointment for another four years? Melissa: No, let’s do six months. Health Hats: Sounds good. See you around the block. <h3><a name="_Toc232333777"></a>Reflection</h3> Neither of us is going to be cured, whatever that word even means. But I am living a good life. I am playing music, traveling, and in love. My grandson just turned eighteen and is graduating from high school. Life is good. That is the whole point, really. The point was never the technology. I know my enthusiasm for using Claude turns some people off. A number of you seriously distrust anything with AI in it, and I don’t dismiss that. I’m uneasy too, less about the tool in my hands than about the AI-industrial complex behind it, the money, power, and momentum, something like splitting the atom: enormous force, no guarantee of where it gets pointed. And yet here I am, using Claude and Claude Cowork to cut the forty to sixty hours I spend on each episode down to about twenty. I’ll share how in future episodes. I hold the worry and use the tools anyway. The point is deciding to drive our own train and being glad to have one more tool in the cab. A tool, a toy used best by someone who knows their own mind and keeps both hands on the wheel. Referenced in episode <a href="http://goingmyownpace.substack.com/" target="_blank" rel="noopener">Melissa’s Substack</a> <a href="https://www.amazon.com/Pregnancy-Fibromyalgia-Definitive-Melissa-Reynolds-ebook/dp/B078BQL9NM?ref_=saga_dp_bnx_dsk_dp" target="_blank" rel="noopener">Melissa’s book on pregnancy, fibromyalgia, and chronic fatigue syndrome</a> <a href="https://www.subscribepage.com/yogaforthechroniclife" target="_blank" rel="noopener">Melissa’s yoga program</a> <a href="https://www.amazon.com/Fibromyalgia-Wont-Win-Learning-Collection-ebook/dp/B09YQKRVN7" target="_blank" rel="noopener">Melissa’s book: Fibromyalgia Won’t Win: Learning, Loving and Living with Chronic Pain and Fatigue (Melissa vs Fibromyalgia The Collection)</a>, <a style="cursor: pointer !important; user-select: none !important;" href="https://www.cab.org.nz/article/KB00001547" target="_blank" rel="noopener">New Zealand’s Right to Records</a>. <a href="#_ftnref1" name="_ftn1"></a> Please comment and ask questions: <ul> <li>at the <a href="#commentform" target="_blank" rel="noopener">comment section at the bottom of the show notes</a></li> <li><a href="https://www.linkedin.com/in/healthhatsdannyvl/" target="_blank" rel="noopener">on LinkedIn </a></li> <li><a href="mailto:danny@health-hats.com" target="_blank" rel="noopener noreferrer">via email</a></li> <li><a href="https://www.youtube.com/@dvanleeu">YouTube channel </a></li> <li>DM on <a href="https://www.instagram.com/healthhats/" target="_blank" rel="noopener">Instagram</a>, <a href="https://www.tiktok.com/@healthhats?lang=en" target="_blank" rel="noopener">TikTok to @healthhats</a></li> <li><a href="https://healthhats.substack.com" target="_blank" rel="noopener">Substack</a></li> <li><a href="https://www.patreon.com/c/HealthHats" target="_blank" rel="noopener">Patreon</a></li> </ul> Production Team <ol> <li><a href="https://twitter.com/lifeoflesion" target="_blank" rel="noopener">Kayla Nelson:</a> Web and Social Media Coach, Dissemination, Help Desk </li> <li>Leon van Leeuwen: editing and site management</li> <li>Oscar van Leeuwen: video editing</li> <li><a href="https://www.linkedin.com/in/julia-higgins-093059a3/" target="_blank" rel="noopener">Julia Higgins: </a>Digit marketing therapy</li> <li>Steve Heatherington: Help Desk and <a href="https://thepodcastingworkshop.com/the-team/" target="_blank" rel="noopener">podcast production counseling</a></li> <li>Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection</li> <li><a href="https://claude.ai/" target="_blank" rel="noopener">Claude</a>, <a href="https://www.perplexity.ai" target="_blank" rel="noopener">Perplexity</a>, <a href="https://auphonic.com" target="_blank" rel="noopener">Auphonic</a>, <a href="https://web.descript.com/" target="_blank" rel="noopener">Descript</a>, <a href="https://www.grammarly.com" target="_blank" rel="noopener">Grammarly</a>, <a href="https://www.blackmagicdesign.com/products/davinciresolve" target="_blank" rel="noopener">DaVinci</a></li> </ol> Inspired by and Grateful to: Photo Credits Related episodes from Health Hats https://health-hats.com/fibromyalgia-managing-pain-doing-the-work/ https://health-hats.com/fibro-mama-book-review/ https://health-hats.com/accessible-yoga-honor-your-body/ 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 <a title="Unplugged and Reconnected. A Day of Rest." href="https://health-hats.com/pod209/" target="_blank" rel="noopener">CC BY-NC-SA</a> <a href="https://creativecommons.org/licenses/by-nc-sa/4.0/"><img decoding="async" src="https://mirrors.creativecommons.org/presskit/buttons/88x31/png/by-nc-sa.png" width="117" height="41" align="right" /></a>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: <div class="nectar-text-inline-images nectar-link-underline-effect nectar-text-inline-images--animation_none nectar-text-inline-images--calculated"> <div class="nectar-text-inline-images__inner"> 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. </div> </div> <div class="wpb_text_column wpb_content_element "> <div class="wpb_wrapper"> Please let me know. <a href="mailto:dannyhealthhats@gmail.com" target="_blank" rel="noopener">dannyhealthhats@gmail.com </a>Material on this site created by others is theirs, and use follows their guidelines. </div> </div> 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)

May 11, 2026

Nurses’ Week, Handel’s Messiah, Oldest Maternity Hospital!

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. <div> <div class="border-borderMain/50 ring-borderMain/50 divide-borderMain/50 dark:divide-borderMainDark/50 dark:ring-borderMainDark/50 dark:border-borderMainDark/50 bg-transparent"> <div class="relative default font-sans text-base text-textMain dark:text-textMainDark selection:bg-super/50 selection:text-textMain dark:selection:bg-superDuper/10 dark:selection:text-superDark"> <div class="min-w-0 break-words [word-break:break-word]"> <div dir="auto"> <div class="prose dark:prose-invert inline leading-normal break-words min-w-0 [word-break:break-word]"> <a href="https://health-hats.com/wp-content/uploads/2026/05/HHP248-Rotunda-Hospital-20260511.pdf" target="_blank" rel="noopener">Click here to view the printable </a>newsletter. More readable than a transcript. Contents </div> </div> </div> </div> </div> </div> Podcast episode on YouTube <iframe id="_ytid_26170" width="1080" height="608" data-origwidth="1080" data-origheight="608" src="https://www.youtube.com/embed/y-O15Opyh78?enablejsapi=1&autoplay=0&cc_load_policy=0&cc_lang_pref=&iv_load_policy=1&loop=0&rel=1&fs=1&playsinline=0&autohide=2&theme=dark&color=red&controls=1&disablekb=0&" class="__youtube_prefs__ no-lazyload" title="YouTube player" allow="fullscreen; accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen data-no-lazy="1" data-skipgform_ajax_framebjll=""></iframe> <h2>Episode</h2> <h2><a name="_Toc229407671"></a>Proem: No Signage, No Appointment, No Problem</h2> Hello. Welcome to <a href="https://pages.nursingworld.org/nursesweek26" target="_blank" rel="noopener">2026 Nurses Week</a>, 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. <h2><a name="_Toc229407672"></a>Midwifery Was Scandalous. He Did It Anyway.</h2> Now let me see. I’ve got some notes here. The hospital was founded in 1745 by a man named <a href="https://www.wikitree.com/photo.php/6/60/Mosse-56.jpg" target="_blank" rel="noopener">Bartholomew Mosse</a>, 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 <a style="cursor: pointer !important; user-select: none !important;" href="https://www.facebook.com/photo.php?fbid=2575388082675479&set=a.453259450167980&id=100064517869145" target="_blank" rel="noopener">New Booth Theatre</a>. 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. <h2><a name="_Toc229407673"></a>When No One Funds Poor Mothers, Try Dancing</h2> 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 <a href="https://en.wikipedia.org/wiki/Neale%27s_Musick_Hall,_Dublin#/media/File:Musick-hall-dublin.jpg" target="_blank" rel="noopener">world premiere of Handel’s Messiah</a> 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 <a href="https://drive.google.com/open?id=1kzZa79Ya7Rwn3s4qdBaqcg4vWWZKrXIr&usp=drive_fs" target="_blank" rel="noopener">Handel statue</a> 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 <a href="https://upload.wikimedia.org/wikipedia/commons/8/80/2009-09-27_Dublin_Garden_of_Remembrance_054.JPG?utm_source=commons.wikimedia.org&utm_campaign=index&utm_content=original" target="_blank" rel="noopener">into a pleasure garden</a> with a live orchestra, theatrical performances, and dances in a coffee house, marrying philanthropy with frivolity to reach the wealthy. <h2><a name="_Toc229407674"></a>Debt, Daring Escape, Death</h2> 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 <a href="https://www.tripadvisor.com/Attraction_Review-g552018-d613119-Reviews-Beaumaris_Castle-Beaumaris_Anglesey_North_Wales_Wales.html" target="_blank" rel="noopener">Beaumaris Castle in Anglesey, Wales</a>. 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. <h2><a name="_Toc229407675"></a>Fix the Air, Save the Babies. Then and Now.</h2> 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. <h2><a name="_Toc229407676"></a>Oldest? It’s Relative.</h2> 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 <a href="https://en.wikipedia.org/wiki/Bellevue_Hospital#/media/File:A_Scene_in_the_New_York_Morgue.jpg" target="_blank" rel="noopener">Bellevue Hospital in New York City,</a> which opened in 1736 as a six-bed infirmary.<a href="#_ftn1" name="_ftnref1">[1]</a> 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 <a href="https://commons.wikimedia.org/wiki/File:PennsylvaniaHospitalWilliamStrickland.jpg" target="_blank" rel="noopener">Pennsylvania Hospital in Philadelphia</a><a href="#_ftn2" name="_ftnref2">[2]</a>, 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 <a href="https://upload.wikimedia.org/wikipedia/commons/7/78/Hotel_Dieu_-_Gravure.jpg?utm_source=commons.wikimedia.org&utm_campaign=index&utm_content=original" target="_blank" rel="noopener">Hôtel-Dieu in Paris</a><a href="#_ftn3" name="_ftnref3">[3]</a>, which officially opened in 650 AD, and that’s the hospital where Mosse became a midwife. There’s <a href="https://upload.wikimedia.org/wikipedia/commons/d/dc/St_Bartholomew%27s_Hospital%2C_London%3B_a_stained-glass_window_sh_Wellcome_V0013022.jpg?utm_source=commons.wikimedia.org&utm_campaign=index&utm_content=original" target="_blank" rel="noopener">St. Bartholomew’s Hospital in London, founded in 1123</a><a href="#_ftn4" name="_ftnref4">[4]</a>. 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. <h2><a name="_Toc229407677"></a>Reflection: Nightingale Was Here Too</h2> So, let’s bring this back to Nurses Day and to Florence Nightingale. Interestingly, <a href="https://dn790006.ca.archive.org/0/items/bookofrotundahos00kirk/bookofrotundahos00kirk.pdf" target="_blank" rel="noopener">Sara E. Hampson was one of the original Nightingale</a> 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 <a href="#_ftnref1" name="_ftn1">[1]</a> By Harper’s Weekly – Harper’s Weekly, Public Domain, https://commons.wikimedia.org/w/index.php?curid=6014479 <a href="#_ftnref2" name="_ftn2">[2]</a> William Strickland (1788-1854) Engraver: Samuel Seymour (1796-1823), Public domain, via Wikimedia Commons <a href="#_ftnref3" name="_ftn3">[3]</a> I, Clio, CC BY-SA 3.0 <http://creativecommons.org/licenses/by-sa/3.0/>, via Wikimedia Commons <a href="#_ftnref4" name="_ftn4">[4]</a> See page for author, CC BY 4.0 <https://creativecommons.org/licenses/by/4.0>, via Wikimedia Commons Are you part of the Rotunda Hospital diaspora? Find me at <a href="mailto:dannyhealthhats@gmail.com">dannyhealthhats@gmail.com</a>. Tell me your version. Please comment and ask questions: <ul> <li>at the <a href="#commentform" target="_blank" rel="noopener">comment section at the bottom of the show notes</a></li> <li><a href="https://www.linkedin.com/in/healthhatsdannyvl/" target="_blank" rel="noopener">on LinkedIn </a></li> <li><a href="mailto:danny@health-hats.com" target="_blank" rel="noopener noreferrer">via email</a></li> <li><a href="https://www.youtube.com/@dvanleeu">YouTube channel </a></li> <li>DM on <a href="https://www.instagram.com/healthhats/" target="_blank" rel="noopener">Instagram</a>, <a href="https://www.tiktok.com/@healthhats?lang=en" target="_blank" rel="noopener">TikTok to @healthhats</a></li> <li><a href="https://healthhats.substack.com" target="_blank" rel="noopener">Substack</a></li> <li><a href="https://www.patreon.com/c/HealthHats" target="_blank" rel="noopener">Patreon</a></li> </ul> Production Team <ol> <li><a href="https://twitter.com/lifeoflesion" target="_blank" rel="noopener">Kayla Nelson:</a> Web and Social Media Coach, Dissemination, Help Desk </li> <li>Leon van Leeuwen: editing and site management</li> <li>Oscar van Leeuwen: video editing</li> <li><a href="https://www.linkedin.com/in/julia-higgins-093059a3/" target="_blank" rel="noopener">Julia Higgins: </a>Digit marketing therapy</li> <li>Steve Heatherington: Help Desk and <a href="https://thepodcastingworkshop.com/the-team/" target="_blank" rel="noopener">podcast production counseling</a></li> <li>Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection</li> <li><a href="https://claude.ai/" target="_blank" rel="noopener">Claude</a>, <a href="https://www.perplexity.ai" target="_blank" rel="noopener">Perplexity</a>, <a href="https://auphonic.com" target="_blank" rel="noopener">Auphonic</a>, <a href="https://web.descript.com/" target="_blank" rel="noopener">Descript</a>, <a href="https://www.grammarly.com" target="_blank" rel="noopener">Grammarly</a>, <a href="https://www.blackmagicdesign.com/products/davinciresolve" target="_blank" rel="noopener">DaVinci</a></li> </ol> Inspired by and Grateful to: Dr. Lisa Masinter and Dr. Michele Whitt, Janice Tufte, Linda DeRosa, Luc Pelletier, Cherie Binns Photo Credits Ann Boland, Paul Boland, Janice Tufte, Danny van Leeuwen, and as referenced in the transcript Related episodes from Health Hats https://health-hats.com/pod133/ https://health-hats.com/ob-nurse-cannabis-nurse/ https://health-hats.com/build-it-and-they-will-come/ 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 <a title="Unplugged and Reconnected. A Day of Rest." href="https://health-hats.com/pod209/" target="_blank" rel="noopener">CC BY-NC-SA</a> <a href="https://creativecommons.org/licenses/by-nc-sa/4.0/"><img decoding="async" src="https://mirrors.creativecommons.org/presskit/buttons/88x31/png/by-nc-sa.png" width="117" height="41" align="right" /></a>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: <div class="nectar-text-inline-images nectar-link-underline-effect nectar-text-inline-images--animation_none nectar-text-inline-images--calculated"> <div class="nectar-text-inline-images__inner"> 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. </div> </div> <div class="wpb_text_column wpb_content_element "> <div class="wpb_wrapper"> Please let me know. <a href="mailto:dannyhealthhats@gmail.com" target="_blank" rel="noopener">dannyhealthhats@gmail.com </a>Material on this site created by others is theirs, and use follows their guidelines. </div> </div> 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)

April 18, 2026

Participatory Governance: Right People Right Question

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: <ul> <li>Open visiting hours in the ICU — and what happened when staff pushed back</li> <li>Seven therapy visits, no prior authorization required — and what happened when the company was acquired</li> <li>A disability services resident on a board of directors — and the simple fix that improved every patient experience metric</li> <li>Why participatory governance is the fastest, cheapest diagnostic tool most health system leaders never use</li> <li>The honest difference between patient advisory boards and actually sharing power with patients</li> <li>What patient-centered care looks like when it moves beyond consultation into real shared decision making</li> </ul> <div> <div class="border-borderMain/50 ring-borderMain/50 divide-borderMain/50 dark:divide-borderMainDark/50 dark:ring-borderMainDark/50 dark:border-borderMainDark/50 bg-transparent"> <div class="relative default font-sans text-base text-textMain dark:text-textMainDark selection:bg-super/50 selection:text-textMain dark:selection:bg-superDuper/10 dark:selection:text-superDark"> <div class="min-w-0 break-words [word-break:break-word]"> <div dir="auto"> <div class="prose dark:prose-invert inline leading-normal break-words min-w-0 [word-break:break-word]"> <a href="https://health-hats.com/wp-content/uploads/2026/04/HHP247-20260414.pdf" target="_blank" rel="noopener">Click here to view the printable </a>newsletter. More readable than a transcript. Contents <div id="ez-toc-container" class="ez-toc-v2_0_82_2 counter-hierarchy ez-toc-counter ez-toc-grey ez-toc-container-direction"> <div class="ez-toc-title-container"> Table of Contents <a href="#" class="ez-toc-pull-right ez-toc-btn ez-toc-btn-xs ez-toc-btn-default ez-toc-toggle" aria-label="Toggle Table of Content">Toggle<svg style="fill: #999;color:#999" xmlns="http://www.w3.org/2000/svg" class="list-377408" width="20px" height="20px" viewBox="0 0 24 24" fill="none"><path d="M6 6H4v2h2V6zm14 0H8v2h12V6zM4 11h2v2H4v-2zm16 0H8v2h12v-2zM4 16h2v2H4v-2zm16 0H8v2h12v-2z" fill="currentColor"></path></svg><svg style="fill: #999;color:#999" class="arrow-unsorted-368013" xmlns="http://www.w3.org/2000/svg" width="10px" height="10px" viewBox="0 0 24 24" version="1.2" baseProfile="tiny"><path d="M18.2 9.3l-6.2-6.3-6.2 6.3c-.2.2-.3.4-.3.7s.1.5.3.7c.2.2.4.3.7.3h11c.3 0 .5-.1.7-.3.2-.2.3-.5.3-.7s-.1-.5-.3-.7zM5.8 14.7l6.2 6.3 6.2-6.3c.2-.2.3-.5.3-.7s-.1-.5-.3-.7c-.2-.2-.4-.3-.7-.3h-11c-.3 0-.5.1-.7.3-.2.2-.3.5-.3.7s.1.5.3.7z"/></svg></a></div> <nav><ul class='ez-toc-list ez-toc-list-level-1 ' ><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class="ez-toc-link ez-toc-heading-1" href="https://health-hats.com/pod247/#Episode" >Episode</a></li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class="ez-toc-link ez-toc-heading-2" href="https://health-hats.com/pod247/#Proem" >Proem</a></li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class="ez-toc-link ez-toc-heading-3" href="https://health-hats.com/pod247/#Part_1_ICU_Doors_Open" >Part 1: ICU Doors Open</a></li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class="ez-toc-link ez-toc-heading-4" href="https://health-hats.com/pod247/#Part_2_Seven_Visits_No_Questions_Asked" >Part 2: Seven Visits, No Questions Asked</a></li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class="ez-toc-link ez-toc-heading-5" href="https://health-hats.com/pod247/#Part_3_The_Right_to_Say_Goodbye" >Part 3: The Right to Say Goodbye</a></li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class="ez-toc-link ez-toc-heading-6" href="https://health-hats.com/pod247/#Synthesis_Whats_Common_Across_All_Three" >Synthesis: What’s Common Across All Three</a></li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class="ez-toc-link ez-toc-heading-7" href="https://health-hats.com/pod247/#Reflection" >Reflection</a></li></ul></nav></div> </div> </div> </div> </div> </div> </div> Podcast episode on YouTube <iframe id="_ytid_53255" width="1080" height="608" data-origwidth="1080" data-origheight="608" src="https://www.youtube.com/embed/LKTpHcuzatQ?enablejsapi=1&autoplay=0&cc_load_policy=0&cc_lang_pref=&iv_load_policy=1&loop=0&rel=1&fs=1&playsinline=0&autohide=2&theme=dark&color=red&controls=1&disablekb=0&" class="__youtube_prefs__ no-lazyload" title="YouTube player" allow="fullscreen; accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen data-no-lazy="1" data-skipgform_ajax_framebjll=""></iframe> <h2>Episode</h2> <h2>Proem</h2> 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. <h2><a name="_Toc227049461"></a>Part 1: ICU Doors Open</h2> 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. <h2><a name="_Toc227049462"></a>Part 2: Seven Visits, No Questions Asked</h2> 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. <h2><a name="_Toc227049463"></a>Part 3: The Right to Say Goodbye</h2> 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 we’d extend to anyone, anywhere, in any other context. Survey results improved dramatically in the next cycle. Not in one or two categories. Across the board. Because what was wrong wasn’t a program or a resource allocation. It was that the people living inside the system had been treated as though their experience of it didn’t count as information. The lesson I carry from that room is the simplest I know: the person living inside the system always knows. They know what’s breaking, what would fix it, and they’ve usually been waiting, sometimes for years, for someone to ask. You just have to put them in the room and believe them when they speak. The keyword is just. Just assumes a lot. <h2><a name="_Toc227049464"></a>Synthesis: What’s Common Across All Three</h2> Three organizations. Three populations. Three problems, unresolved within systems staffed by smart, well-meaning people. In every case, the answer was already there. It lived in the wrong room. I want to be honest about something. Looking back, only one of these three was truly participatory governance: the man in the group home who served on our board. The ICU families and advisory group members had real influence but no structural authority. They could inform decisions, but they couldn’t stop them. That distinction matters, and I don’t want to paper over it. What they all shared was something simpler yet harder than governance design: someone with institutional power chose to ask, then chose to act on what they heard. The families pacing the ICU waiting room knew visiting hours weren’t protecting patients; they were protecting the unit’s sense of order. The members and providers in that behavioral health advisory group knew prior authorization wasn’t ensuring quality; it was ensuring paperwork. The man on our board knew what was breaking down wasn’t resources or staffing ratios. It was the simple human expectation of a goodbye. None of them needed a consultant. They needed someone with enough authority to ask the question and enough humility to sit with the answer. Here’s what I’ve come to believe: participatory governance, done seriously, is the fastest and cheapest diagnostic tool any leader has. Faster than a consultant. Cheaper than a task force. More accurate than a satisfaction survey that asks the wrong questions of the right people and calls it listening. The nos in these stories weren’t radical. They were obvious, embarrassingly obvious, once you asked the people who already knew. What made them feel radical was the gap between where the knowledge lived and where decisions were made. That gap has a name. Several, actually. We call it hierarchy, liability, chain of command, and expertise — the comfortable assumption that the people at the top understand a system better than those inside it every day. Sometimes that’s true. Often it isn’t. And the cost of acting as though it’s always true is borne by those with the least power to push back. The anxious family in the hallway. The member who couldn’t get through. The man in the group home who, generously, assumed we already knew what he was about to tell us. They were the experts. We had the org chart. <h2><a name="_Toc227049465"></a>Reflection</h2> Honestly, I’m proud of these three stories, but I’m not sure I deserve much credit. In each case, the hard work, the observing, the enduring, the knowing, was done by someone else. A family pacing a hallway. A patient who kept calling back. A man who showed up for board meetings and told the truth to a room that had been avoiding it. I contributed a willingness to ask and enough positional authority to act on what I heard. I’m struck by how long those answers had been waiting. The ICU families weren’t new. Frustration with prior auth wasn’t a surprise to anyone who’d navigated it. How long had group home residents been losing people without warning? Nobody seemed to know exactly, long enough that it had stopped registering as a problem and had started registering as just the way things were. That’s the part I can’t shake: the way systems normalize their own failures. The way this is how we do it becomes indistinguishable from this is the only way it can be done. And the people most hurt by that confusion are usually the least positioned to correct it. I got lucky. Three times, I was in the right seat, and the right person was willing to tell me what I needed to hear. Not every leader gets that, and not every leader goes looking for it. The question I’d leave you with — the one I still ask whenever I walk into a new system, a new organization, or any room where decisions are being made about people who aren’t present: Who already knows the answer? And what would it take to let them say it out loud? If you’ve been in that room — where someone finally said the quiet part and the right no was finally spoken — I want to hear about it. Find me at <a href="mailto:dannyhealthhats@gmail.com">dannyhealthhats@gmail.com</a>. Tell me your version. I promise you: it’s better than you think. And someone out there needs to hear it. Please comment and ask questions: <ul> <li>at the <a href="#commentform" target="_blank" rel="noopener">comment section at the bottom of the show notes</a></li> <li><a href="https://www.linkedin.com/in/healthhatsdannyvl/" target="_blank" rel="noopener">on LinkedIn </a></li> <li><a href="mailto:danny@health-hats.com" target="_blank" rel="noopener noreferrer">via email</a></li> <li><a href="https://www.youtube.com/@dvanleeu">YouTube channel </a></li> <li>DM on <a href="https://www.instagram.com/healthhats/" target="_blank" rel="noopener">Instagram</a>, <a href="https://www.tiktok.com/@healthhats?lang=en" target="_blank" rel="noopener">TikTok to @healthhats</a></li> <li><a href="https://healthhats.substack.com" target="_blank" rel="noopener">Substack</a></li> <li><a href="https://www.patreon.com/c/HealthHats" target="_blank" rel="noopener">Patreon</a></li> </ul> Production Team <ol> <li><a href="https://twitter.com/lifeoflesion" target="_blank" rel="noopener">Kayla Nelson:</a> Web and Social Media Coach, Dissemination, Help Desk </li> <li>Leon van Leeuwen: editing and site management</li> <li>Oscar van Leeuwen: video editing</li> <li><a href="https://www.linkedin.com/in/julia-higgins-093059a3/" target="_blank" rel="noopener">Julia Higgins: </a>Digit marketing therapy</li> <li>Steve Heatherington: Help Desk and <a href="https://thepodcastingworkshop.com/the-team/" target="_blank" rel="noopener">podcast production counseling</a></li> <li>Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection</li> <li><a href="https://claude.ai/" target="_blank" rel="noopener">Claude</a>, <a href="https://www.perplexity.ai" target="_blank" rel="noopener">Perplexity</a>, <a href="https://auphonic.com" target="_blank" rel="noopener">Auphonic</a>, <a href="https://web.descript.com/" target="_blank" rel="noopener">Descript</a>, <a href="https://www.grammarly.com" target="_blank" rel="noopener">Grammarly</a>, <a href="https://www.blackmagicdesign.com/products/davinciresolve" target="_blank" rel="noopener">DaVinci</a></li> </ol> Inspired by and Grateful to: Jan Oldenburg, Laura Marcial, Ronda Alexander, Libby Hoy, Lacy Fabian, James Harrison Photo Credits NASA Referenced in episode   <a name="_Toc224043274"></a>Related episodes from Health Hats https://health-hats.com/patient-family-advisors-back-2-basics/ https://health-hats.com/teachable-spirit-patient-family-advisors/ https://health-hats.com/pod237/ 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 <a title="Unplugged and Reconnected. A Day of Rest." href="https://health-hats.com/pod209/" target="_blank" rel="noopener">CC BY-NC-SA</a> <a href="https://creativecommons.org/licenses/by-nc-sa/4.0/"><img decoding="async" src="https://mirrors.creativecommons.org/presskit/buttons/88x31/png/by-nc-sa.png" width="117" height="41" align="right" /></a>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: <div class="nectar-text-inline-images nectar-link-underline-effect nectar-text-inline-images--animation_none nectar-text-inline-images--calculated"> <div class="nectar-text-inline-images__inner"> 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. </div> </div> <div class="wpb_text_column wpb_content_element "> <div class="wpb_wrapper"> Please let me know. <a href="mailto:dannyhealthhats@gmail.com" target="_blank" rel="noopener">dannyhealthhats@gmail.com </a>Material on this site created by others is theirs, and use follows their guidelines. </div> </div> 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)

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What is Health Hats, the Podcast?: Learning with people on the journey toward best health.
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