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

MS patient turned healthcare disruptor shares why your biggest "problem users" are actually your most valuable system improvers. Summary 🎯 The Lede: Collaborate with patients, caregivers, and clinician partners to develop tools that truly inform health decisions. From a reluctant keynote speaker who prefers hallway conversations comes wisdom about transforming healthcare through authentic partnership. At the American Nursing Informatics Association conference, Danny van Leeuwen shared how his MS diagnosis led to a revolutionary approach with his neurologist: "You don't know anything about multiple sclerosis, but I don't know anything about you." Key Insights: Healthcare hackers aren't criminals—they're your most dedicated users finding creative workarounds Collaboration is about power dynamics; the more you hoard power, the less you can truly partner Everyone needs to be at the table: patients, caregivers, AND clinicians Aim for a .300 batting average—failing more than succeeding, but keep swinging The secret sauce? Bobbleheads on his desk representing different audience personas, grandsons who told him to stop burying the lede, and the understanding that making healthcare decisions is like renovating a kitchen—endless choices requiring trusted partners. Ready to take one more step in collaboration? Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProem: A Reluctant Keynote Speaker’s ConfessionGrandkid WisdomLead with the LedePodcast introPrepare for ActionStart with Self-KnowledgeMS Detective: Dr. SherlockActivists, DisruptorsThe Bottom LineHealth and Care Decisions, Like Kitchen RenovationBobbleheads of InformaticistsIn Defense of Healthcare Hackers, the Good KindMy HacksCall to actionInevitable Disruption, PearlsCat Herding 101: Without Losing Your MindCollaboration: Sharing Your ToysHouse Cleaning before ReorganizingPartnership from the Ground UpThe Power Dynamics Tango: Who’s Leading This Dance?Foundational ExpectationsCapacityThe .300 Batting Average PhilosophyCulture, Listening, Sharing PowerNext StepsReflectionPodcast OutroRelated episodes from Health Hats Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Production Team You know who you are. I'm grateful. Podcast episode on YouTube Inspired by and Grateful to Mark Heyward Johnson, Kristina Moran, Leon and Oscar van Leeuwen, Michael Chaffin, Josef Chlachula, Tom Trainer, Pegret Harrison, Fred Gutierrez, Jeff Horner, CA Stockwell, Wendy Coad, Bob Lecher Links and references American Nursing Informatics Association Susannah Fox Episode Proem: A Reluctant Keynote Speaker’s Confession A confession: I'm a keynote speaker who’s ambivalent about keynote speeches. Give me the hallway conversations, the poster sessions, and the coffee-break connections—that's where my unexpected learning happens. But when my friend and podcast guest, Mark Heyward Johnson, invited me to speak at the American Nursing Informatics Association conference in New Orleans, I faced a delicious challenge: how do you transform a formal presentation into the kind of authentic exchange that changes how people approach their work? Grandkid Wisdom The answer, it turns out, lies in the space between listening and action—and in the wisdom of my two teenage grandsons, who advised me to stop burying the lede and use fewer words on my slides, along with my international colleagues who offered expertise in honing audience engagement through storytelling and keeping the focus on the ask. Lead with the Lede The conference took place at the end of March. I received the full professional multimedia recording of the presentation in mid-May,