Health Hats, the Podcast

Introducing you to my new Patreon page so that I can earn some revenue to help me keep the lights on. Fans can pay a $small amount each month for bonus rewards. About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. We respect Listeners, Watchers, and Readers. Show Notes at the end. Watch on YouTube Read The same content as the podcast, but not a verbatim transcript. A newsletter-like version with images. Could be a book chapter. download the printable transcript here Episode Notes Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram, Twitter, Mastadon to @healthhats Credits 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) Sponsored by Abridge Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Hey there. As one of my blogging, podcasting, and vlogging cronies, I’m excited to share a sneak peek of a big upcoming launch with you and see what you think. For the past few weeks, I’ve been working on a Patreon page so that I can earn some more ongoing revenue through my fans to help me keep the lights on. With Patreon, fans can pay a small amount of money each month in exchange for some bonus rewards. The “About” tab tells you more. Free will remain an option. https://health-hats.com/free/ I’ve launched my page, but it isn’t finalized. Go here. https://www.patreon.com/user?u=8382489. Click on the “About” and “Membership” tabs. I’d love to hear any feedback you have about it before I make it live for the world. Specifically, Does everything make sense? Is it clear what Patreon is and what fans get out of joining my community? What do you think of the rewards? Do any, in particular, stand out as things you would join Patreon for? Is there anyone you think I should connect with to help spread the word once I launch? Thanks for letting me know what you think. I’m excited to get this off the ground and couldn’t do it without the support of friends, and family like you. I’ll be sending out an email to my mailing list subscribers once I launch. So feel free to add your email here https://health-hats.com/free/ if you’d like to stay in the know. I’m looking forward to incorporating your feedback into my final page. Thanks.

Dr. Joel Hudgins muses on up and downstream changes to Peds ED for emerging adults with mental illness. Higher numbers & acuity, too few beds, services, & staff About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. We respect Listeners, Watchers, and Readers. Show Notes at the end. Watch on YouTube Read The same content as the podcast, but not a verbatim transcript. A newsletter-like version with images. Could be a book chapter. download the printable transcript here Contents Proem.. 1 Update on Mighty Mouth Casey Quinlan. 2 Podcast intro. 2 Health is fragile. 2 Crossing the threshold into the ED. 2 How can we help up front?. 3 Upstream and downstream issues 4 Can we really help? It takes a toll. 4 A word from our sponsor, Abridge. 5 System interventions/solutions. 5 Hopeful, hopeless 6 Real people all around. 6 Profound knowledge. 7 Academic medical center versus critical access hospital 7 Reflection. 8 Next: Episode #8: COAST. 8 Podcast Outro. 9 Proem In this series we’ve met Emeka and Annie, two emerging adults with mental illness and Emeka’s mom, Erika. We learned about their ‘something’s wrong’ experience, finding treatment, family dynamics, and recovery. We met Matt, a high school teacher leading a student-run welcoming Ambassador program, and Dr. Bonnie, a primary care doc, managing the care of emerging adults with developing and full-blown illness with limited resources. You can see that I’m starting in the center with lived experience and spiraling out. Photo by razvan-mirel-xhYhjMIfsq8-unsplash Welcome to today’s episode, #7 in the series, of the lived experience of another professional, Dr Joel Hudgins, pediatric emergency physician at Boston Children’s Hospital. Full disclosure, I worked from 2002 to 2008 at Boston Children’s leading their patient family experience initiative and I worked as a nurse/paramedic at two rural hospitals in West Virginia in the late eighties, early nineties. Despite my experience in pediatrics and emergency services, I feel out-of-touch with the dynamics of treating an increasing proportion of youth with mental illness while also faced with exploding infectious disease incidence, COVID, RSV, and flu. Emergency care and pediatrics are near and dear to my heart. Let’s see what we can learn with Dr. Joel Hudgins. Update on Mighty Mouth Casey Quinlan Before we begin, I published my last episode on April 1, 2023, the mashup of my chats with Casey Quinlan. Many subscribers reached out to me. Is Casey alive or has she passed? I purposefully left it ambiguous because I didn’t know when people would be reading, listening, or watching. Besides, Casey told me several times over the years when I called her about various deaths in my family, why do funerals and memorial services need to come after death? Anyway, as of today, April 12, 2023, Casey lives in a hospice, with several visitors a day, alert for short periods of time, still snarky. Go to CaringBridge.com, for up-to-date information from Jan Oldenburg. From Health Hats, the Podcast https://health-hats.com/pod193/ Podcast intro Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this. Health is fragile Health Hats: Thank you so much for joining us. We need your perspective as an emergency room doc. Why don’t you introduce yourself by telling us a little about when you first realized health was fragile? Joel Hudgins: That’s an excellent question. I grew up in rural Texas, and my granddad was a general practitioner there. I still remember going around with him back in the early eighties. He would do times where he would go to people’s homes, or he had attending privileges at various hospitals. So, I would accompany him on some of his trips. As I look back, I didn’t realize it at the time, but I think what interested me was his ability to connect with people uniquely. As part of that, you asked when I learned health was fragile. I think that was probably my exposure to sickness and people who died. I believe that relationship seemed so unique and resonated with me and was something that I think ever since I did that with him when I was young, it felt like that was the path I wanted to go down. Crossing the thresh

Mid-March,Casey didn’t often sound lucid or humorous. She spun a yarn and offered wisdom sporadically. Grateful for her impact on the patient-caregiver movement About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. We respect Listeners, Watchers, and Readers. Show Notes at the end. Watch on YouTube Read The same content as the podcast, but not a verbatim transcript. A newsletter-like version with images. Could be a book chapter. If you don’t see the embedded newsletter download the printable transcript here Loading... Taking too long? Reload document | Open in new tab Episode Notes Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram, Twitter, to @healthhats Credits Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, and Arranger including Moe’s Blues for Proem and Reflection Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion Leon van Leeuwen edits the article-grade transcript. Intro photo of Vulture Couple by Rich Rieger used with permission Photo of fire by Ani Kolleshi on Unsplash Photo of fist by Dan Burton on Unsplash Photo of silos by Ricardo Gomez Angel on Unsplash Photo of ice cream by Food Photographer | Jennifer Pallian on Unsplash 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) Sponsored by Abridge Inspired by and grateful to Jan Oldenberg, Geri Lynn Baumblatt, Fred Trotter, Claire Sachs, Lygeia Ricciardia, and hundreds of others Links In hospice, Mighty Casey receives SPM’s “Doc Tom” Award Related podcasts https://health-hats.com/pod127/   https://health-hats.com/pod132/   https://health-hats.com/pod139/   https://health-hats.com/pod181/   Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines.

Discover how PCP Dr. Bonnie Engelbart manages the referral maze & limited resources when caring for emerging adults with mental illness. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode can be watched on YouTube Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Podcast intro 01:26. 2 Health is fragile 02:00. 2 Primary care practice at Cambridge Health Alliance 05:31. 3 Screening for mental illness 06:29. 3 The referral maze 08:10. 3 Team building 11:40. 4 Toll on staff 14:02. 4 The burden of stigma, lack of resources, barriers to continuity 14:41. 5 Need more bodies 17:00. 5 Care partners 18:31. 5 A word from our sponsor, Abridge 19:27. 6 Complex time 20:09. 6 Changes over the past twenty years 21:27. 6 Self-medication 22:56. 7 Questions for emerging adults 24:03. 7 Questions for administrators 25:27. 7 The burden of cost to families 27:19. 7 Culture and language 28:09. 8 Reflection 30:35. 8 Next #7 Emergency medicine: We’re not trained for this 32:25. 9 Podcast Outro 33:02. 9 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram, Twitter, Mastadon to @healthhats Credits Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Proem and Reflection Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion Intro photo of Vulture Couple by Rich Rieger used with permission Photo of Swaziland by Ndumiso Silindza on Unsplash Images of emerging adult with mental illness and community collaboration from DALL.E 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) Sponsored by Abridge Inspired by and grateful to Laura Zucker, Mike Herndon, Sue Donnelley, Luc Pelletier   Links World Health Organization (WHO) Adolescent Mental Health Most mental health concerns, especially for emerging adults, first present in primary care, placing them in a critical role for addressing these concerns. The PSC-17 Pediatric System Checklist is a brief questionnaire that helps identify and assess changes in emotional and behavioral problems in children When kids turn 18, we transition to a form called the AWQ, Cambridge Health Alliance Adult Wellbeing Scale, which screens for depression, anxiety, and substance use. National Alliance of Mental Health: Kids, Teens, and Young Adults, White House Fact Sheet: Improving Access and Care for Youth Mental Health and Substance Abuse Conditions, American Academy of Family Practice (AAFP) article, Managing Behavioral Health Issues in Primary Care: Six Five-Minute Tools. Related podcasts Series: Emerging Adults with Mental Illness Pediatric Transition to Adult Care | Danny van Leeuwen Health Hats (health-hats.com) About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe, go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem According to the World Health Organization (WHO) Globally, one in seven 10-19-year-olds experiences a mental disorder, accounting for 13% of the global burden of disease in this age group. Depression, anxiety, and behavioral disorders are among the leading causes of illness and disability among adolescents. Suicide is the fourth leading cause of death among 15–29-year-olds. The consequences of failing to address adolescent mental health conditions extend to adulthood, impairing both physical and mental he

Costa Rica welcomes travelers with disabilities. Juve Acuna, travel guide, spent a week with us sharing his expertise in flora, fauna, history, & disabilities. Blog subscribers: Listen to the podcast here. Scroll down through the show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode is best watched on YouTube Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Podcast intro 03:58. 2 Grandfather of disability travel 04:33. 2 Capabilities and preferences 07:07. 3 Building a network 08:30. 3 Preparation 10:51. 4 National Tourism Board 12:48. 4 Building infrastructure for accessibility 13:44. 5 The network for accessibility 16:39. 5 Pride 17:30. 5 Possibilities, safety 19:42. 6 A word from our sponsor, Abridge 21:14. 6 Photo highlights of the trip 21:57. 7 Swimming in the Pacific Ocean 22:16. 7 Howler and white-faced monkeys 23:17. 8 Reflection 24:02. 8 Podcast Outro 24:53 8   Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram, Twitter, Mastadon to @healthhats Credits Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion Intro photo of Vulture Couple by Rich Rieger used with permission Photo by Iswanto Arif on Unsplash Photos taken by Ann Boland, Paul Boland, Juve Acuna, and Danny van Leeuwen 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) Sponsored by Abridge Inspired by and grateful to Ann Boland, Linda and Mike DeRosa, Kate Higgins, Mary Lawler Links Il Viaggio Travel Costa Rica – Plan your trip to Costa Rica with us (ilviaggiocr.com) Where to Go Bird-Watching in Costa Rica – Tripadvisor Arenal Hanging Bridges | Experiencing Costa Rica From The Treetops (parenthoodandpassports.com) Related podcasts Camino | Danny van Leeuwen Health Hats (health-hats.com) About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show To see the transcript with images download the printable transcript here Proem Figure 1: Skywalk hanging bridge in Arenal National Park, Costa Rica Figure 2: Danny in his chair with our guide, Juve Just stay in the middle. Stay in the middle? The suspension bridge was six inches wider on each side than my electric wheelchair. I’m good with my joystick, but am I that good? Gulp, I can’t see the bridge’s other end, but Juve knows what he’s talking about. Juve Acuna Sanchez is the grandfather of disabled travel in Costa Rica. He takes people with spinal cord injuries, limited vision, cognitive challenges, and me on guided tours. He says I can do it. I’m approaching the longest suspension bridge in Costa Rica, 984 feet (a tenth of a mile), stretching 230 feet over the stunning tropical forest canopy. That’s about 30 stories high. OK, I can do this. One hundred feet, so far, so good. Then the bridge starts swaying. By midway, it’s swinging about a foot and a half from side to side. OMG, I’m afraid of heights. There are people in front of me and people behind me. We stop and let the people in front of us finish, so the bridge sways less. But people keep coming behind and wait impatiently. I remember to start recording using my phone on a selfie stick attached to my left armrest. The sides of the suspension don’t attach to the bridge, only the

Matt Neil, teacher, offers a hopeful story. Not focusing on mental health per se but on belonging and inclusion in a typically lonely time – high school. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode is best watched on YouTube Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings Proem Podcast intro 01:46 Health is fragile 02:20 Health class 03:35 Introducing Ambassadors 04:53 Sustaining the Ambassadors program 06:42 Three points of contact 07:52 New student defined 08:27 Back to school after a life-changing event 09:30 Kathy’s table 13:50 Prevention is invisible 15:26 A word from our sponsor, Abridge 18:18 Support and continuity 19:00 Continuity and diversity 21:23 Team leadership 22:42 Ninth grade 23:55 Perhaps they don’t want help 25:04 A lesson from failure 25:51 Standardization, data 27:53 Social health, a safe place 29:21 Loneliness, belonging, hope 30:50 Captain, CEO of your health team 32:48 What can we do to help young people? 33:42 Wisdom shared 36:06 Reflection 39:53 Nuggets from the Mine 40:42 What’s next? 41:18 Dr. Bonnie Engelbart, Primary Care 41:38 Podcast Outro 43:44 to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram, Twitter, Mastadon to @healthhats Credits Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Proem and Reflection Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion Intro photo of Vulture Couple by Rich Rieger used with permission Image of emerging adult with mental illness and community collaboration from DALL.E Photo by Alex Simpson on unsplash Photo by Trung Thanh on Unsplash High school 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) Sponsored by Abridge Inspired by and grateful to Karl Madeo, Marc Lefebvre, Bonnie Engelbart, Ruben van Leeuwen, Kathy Bloom Links Related podcasts Series: Emerging Adults with Mental Illness https://health-hats.com/a-learning-community-for-ceos-of-your-health/   About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Welcome to episode #5 of the series: Emerging Adults with Mental Illness. So far, we’ve heard from two emerging adults and one parent, Emeka, Erika, and Annie. As we expand the circle around them, I wanted to hear from a high school teacher. I could have included a counselor or an administrator, but when I listened to my dear friend, teacher, and previous guest, Matt Neil, speak about the Ambassadors Program he sponsors, I knew this was righteous. Having already interviewed sixteen people for the series, I often feel hopeless. What a mess we’re in! Everything seems reactive to an inadequate, fractured, byzantine national mental health unsystem. Reactive by needful, helpful participants worn down beating their heads against walls. Reactive, not preventative. Matt offers a hopeful story. He’s not focusing on mental health per se but on belonging and inclusion in a typically lonely time – high school. Other than with family, emerging adults spend most time in school. Here we go. Enjoy and thanks for joining me. Podcast intro Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a li

Annie Schneider with Bipolar II, experiencing abrupt and slow simmering transitions from home, hospital, school. Develops agency, control, and trust. Powerful! Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode is best watched on YouTube Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings Proem Introducing Annie Schneider 02:18 Podcast intro 03:18 Something’s wrong 04:07 Self-reflection 06:49 Something helps! 07:47 Diagnosis 09:32 Who is ‘we’? 11:31 Underwater 13:15 Friends 14:43 Hospital friends/peers 16:17 Not a medical hospitalization 16:47 Abruptly in 17:21 Survivor’s guilt 21:45 Abrupt hospital exit – discharge 22:46 Abrupt re-entry back to school 24:21 Familiar with what others may be experiencing 26:06 Just get over it 27:07 A word from our sponsor, Abridge 30:15 Toolbox 30:58 Physical tools – medications 32:56 Tools: sunshine, friends, and pets 34:26 Alcohol 35:29 Apps 36:27 What change would you make for best life? 37:57 Reflection 43:03 Next episode: Matt Neil 43:46 Podcast Outro 45:09 to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram, Twitter, Mastadon to @healthhats Credits Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Reflection Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion Intro photo of Vulture Couple by Rich Rieger used with permission Image of emerging adult with mental illness from DALL.E Photo by Stormseeker on Unsplash underwater Photo by Khamkéo Vilaysing on Unsplash reentry Photo by Colton Sturgeon on Unsplash Meditation Photo by Trung Thanh on Unsplash High school 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) Sponsored by Abridge Inspired by and grateful to Emeka Chima, Erika Blair, Sue Donnelly, Matt Neil, Bonnie Englebart Links Bipolar II Headspace’s website: https://www.headspace.com/ Related podcasts Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care Series: Emerging Adults with Mental Illness About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem We continuously cross thresholds in our lives; a beginning, a change – before we weren’t, now we are. We transverse a physical threshold when entering a building, a room, or a town; when we enter a community, a relationship, or an experience. We step over a threshold as we enter a clinic, go for a test; when the doctor or nurse enters the room or responds to a text; when we call our insurance company; when someone asks, how are you? We cross a threshold when we feel a lump, hear a diagnosis, throw up, panic, feel pain, or fall. Before, we didn’t. Now we do. Thresholds can be barriers or opportunities or barriers and opportunities. Crossing a threshold can present us with limitless possibilities. Who knows what might happen? Anticipation, excitement, hope. Some thresholds upset our sense of balance, our inertia. Why me? Distraction, hopelessness, annoyance, frustration, fatigue, even rage. Crossing a threshold can energize or suck energy, depending on the moment and perspective. Welcome to the fourth episode in a series about Emerging Adults with Mental Illness. We met Emeka Chima and his mom Erika Blair. They

#3: Erika Blair, proud of son, Emeka Chima. Found professionals with lived experience, integrated teams, positive support & a sense of hope from other parents. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode is best watched on YouTube Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem Challenges of multi-media. A note to followers. 01:14 Podcast intro 02:48 Health is fragile 03:22 Proud of your son 04:19 Getting to diagnosis 04:50 Help in school 06:33 First psychotic break 07:36 Finding integrated help for the family 09:03 Goal-based care 10:44 IEP finally 11:18 Transitioning back 12:17 A word from our sponsor, Abridge 13:00 Freaking out together 13:44 Questions for professional helpers 14:51 Do professionals have lived experience? 16:19 Giving back 17:14 Hope 18:10 Family on the team 18:49 Early intervention 20:15 Students with Psychosis 22:29 Positive support for parents 25:02 Reflection 27:09 Annie Schneider 29:19 Matt Neil 30:23 Podcast Outro 32:13 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram, Twitter, Mastadon to @healthhats Credits Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Reflection Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion Intro photo of Vulture Couple by Rich Rieger used with permission Photo by Nick Fewings on Unsplash 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) Sponsored by Abridge Inspired by and grateful to Matt Neil, Annie Schneider, Links IEP (Individualized Education Plan) Asperger’s Syndrome DSM V Johns Hopkins Bayview Johns Hopkins’ Early Psychosis program National Association of Mental Illness Students with Psychosis Related podcasts Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care Series: Emerging Adults with Mental Illness About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem My privilege offers little experience with the loneliness of severe illness without reliable support. Meaning I have fantastic support. I seldom experience profound loneliness. Hope and support go together. Hope and support provide a foundation upon which to build spiritual health. Spiritual strength hastens recovery toward best health. Much support comes from caregivers, be they family, friends, or professionals. Caregivers are necessary for best health for those of us with disabling chronic or acute illnesses. Hence, the second episode in this series about emerging adults with mental illness centers on a mom, parent, and caregiver: Erika Blair, mother of Emeka Chima. I’m grateful to Erika and Emeka for their willingness to share their journey with us. Challenges of multi-media. A note to followers. I realize that my inclusion of video in my production channels can create some dilemmas for readers and listeners. You can’t see the videos and might miss guests’ body language, scrolling images, and print. I try to stay aware of these dilemmas. When I started my podcast, many blog followers thanked me for my years of content creation and prepared to move on. Not wanting to lose a loyal audience, I created article-grade audio transcripts. Verbatim

Since AI dissemination exploded in 2022, I wanted to create my holiday letter using a variety of AI apps. May you all have adventures, rest, and inspiration. Love ya. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Better to watch than listen   Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem Podcast intro 00:43 Or as CHAT GPT translated as a Shakespearean sonnet 01:19 Boland van Leeuwen family 02:16 Health 02:43 Music, my life 02:54 Multimedia publishing 03:27 A word from our sponsor, Abridge a la ee cummings 04:00 Advocacy 04:36 Reflection 04:36 Podcast Outro 05:53 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 or Twitter to @healthhats Credits Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Photo by Rich Rieger Photo by Diane Feil on Unsplash Images by DALL.E https://labs.openai.com/e/qK0AYWzbfbstxmhUIXpDUNXu/CUf17lDwAbvALkZwa9zuHi2M https://labs.openai.com/e/sgimC5lsgZBWobq2ZIgFQD1i/aDAs9Tgmuk4yfhdAk0aBtkLh https://labs.openai.com/e/v8iDSCzKlD13AVPPwjiAQ7v2/0YGebq0qdijNJTcxXHgQbggz https://labs.openai.com/e/rrb28KfkM47oki5Ju9BQnwAN/kDDr4QrrDO1GnXH16T6QXSpk Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to all of you Links I’ll be using two versions of Descript’s AI created overdubs of my voice, reading scripts created by CHAT CPG(2020), with images drawn by DALL.E, and my avatar done in Remini. Related podcasts https://health-hats.com/pod105/ https://health-hats.com/engaging-with-sax-good-as-i-am-merry-holidays/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem May the New Year surround you with empathy, equanimity, spirit, and gratitude. You’re hearing me speak in my own voice. Since AI dissemination exploded in 2022, I wanted to create the rest of my holiday letter using a variety of the AI apps out there I’ll be using two versions of Descript’s AI created overdubs of my voice, reading scripts created by CHAT GPT(2020), with images drawn by DALL.E, and my avatar done in Remini. Podcast intro Photo by Rich Reiger used with permission Welcome to Health Hats, the Podcast I’m Danny van Leeuwen a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this. Or as CHAT GPT translated as a Shakespearean sonnet Photo by Diana Feil on Unsplash I dropped the intro script into CHAT GPT asking for a Shakespearean sonnet version. Here’s the result. Notice mispronunciations. Listen, dear reader, and you shall learn Of the awesome circus that is healthcare A world of endless questions, twists, and turns Where realities are often hard to bear   We must adjust to life’s harsh realities And navigate the maze of rules and regulations We must learn to listen to all perspectives And find ways to work together in collaboration   For in the world of healthcare, no one person Can know all the answers or have all the solutions We must listen a

Episode #2: Emerging Adult living with Schizophrenia, finding help, using a toolbox to cope, giving back as peer specialist, leading with Students with Psychosis Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode is best watched on YouTube Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem Podcast intro 01:53 When did you realize health is fragile? 02:27 How did mental illness feel? 03:15 Loneliness 05:54 Get treatment sooner 06:52 My parents, my chosen family 07:26 More than medication – empathy 09:19 Re-entry, relearning 10:15 Finding the right medication 11:57 Hospital to school 12:40 Finding the right therapist 13:52 Remission, cured? 15:05 A word from our sponsor, Abridge 16:59 Never too early to ask for help 17:41 Keep your coping skills in your toolbox 20:10 I wish health professionals… 21:01 Need, capacity, staff, recovery coaches 22:05 Reciprocating as a peer specialist 23:32 Students with Psychosis 24:20 Reflection 28:19 Clip -Erika Blair, Emeka’s Mom 28:35 Nugget from the Mine – Ciel Coffee 29:58 Podcast Outro 32:02 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram, Twitter, Mastadon to @healthhats Credits Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Reflection Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion Intro photo of Vulture Couple by Rich Rieger used with permission Photo by Nick Fewings on Unsplash 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) Sponsored by Abridge Inspired by and grateful to Jimmy Clare, Jason Stewart, Keith Scott Links Johns Hopkins Bayview Students with Psychosis Nuggets from the Mine (Unfunded Recommendation) Ciel Coffee Roasters FOR COFFEE CONNOISSEURS. Nothing but the best. For me, the best reflects a coffee product of time, attention, and care from the Coffee Producer and the Coffee Roaster. Each bean is a reflection of its best potential Related podcasts https://health-hats.com/peer-support-patience-and-kindness/ https://health-hats.com/pod117/ https://health-hats.com/pod114/ Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care Young Adults, Parents, alone, together. High school, college, professionals, parent. Plus physician, teacher Series: Emerging Adults with Mental Illness   About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Photo by Diana Feil on Unsplash Health Hats: I’ll tell you a funny story before we start. One of my first interviews was with this fellow who was a clown. Reading the Room. Lessons from the Clowns. Take 2. He worked at Boston Children’s Hospital with the kids. He talked about being a clown and the importance of being comfortable with failure. He would go into the rooms and had to read the room fast. What are the dynamics? How’s the kid feeling, and how are the parents feeling? He says you must be comfortable with half the time misreading the room. We had this great conversation, then hung up, and I realized I had never recorded. I had to call ‘him back and say, Let’s embrace failure. I forgot to record. So, we did it again. It was better. Emeka Chima: Oh, thanks for sharing that. That’s an

We need our emerging adults healthy in spirit, mind, body. How can we learn more about their exploding mental illness? Start with people with lived experience. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode is best watched on YouTube Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem Toward a more profound understanding 01:18 Podcast intro 02:18 Approach 02:58 Version two – do over 03:44 Up and running 04:02 A taste of the first three episodes 05:28 Emeka Chima 05:34 Erika Blair 07:23 Annie Schneider 09:50 A word from our sponsor, Abridge 11:09 Why me? 11:52 Adolescent Advisory Panel 12:32 Integrated community collaboration 13:28 Leadership with lived experience 15:11 The stage is set 17:24 Nuggets from the mine -CURESZ.com 18:43 Podcast Outro 20:00 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Photo by Nick Fewings on Unsplash Photo by Kat J on Unsplash 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) Sponsored by Abridge Inspired by and grateful to Bethany Yeiser, Robert Doherty, Chris Gordon, Greg Fredo, Sneha Dave, Betsy Neptune, Sue Donnelly Links   Nuggets from the Mine CURESZ.org Comprehensive Understanding via Research and Education and Schizophrenia Related podcasts Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care Young Adults, Parents, alone, together. High school, college, professionals, parent. Plus physician, teacher https://health-hats.com/pod178/   https://health-hats.com/pod174/   About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Health Hats: We, the collective societal we need so much. Our health, our health systems, health equity are an embarrassing, unacceptable mess. I’m old. I’m 70. And I’m at the end of my life. We need our young people, our adolescents and our emerging adults to be healthy and take over to do what we couldn’t or what we haven’t. You must be living in a total bubble not to see how the mental health of our young adults has suffered. It’s scary at risk. The problem has stared us in the face for a long time. But now in this COVID world, it’s undeniable. We can’t ignore the personal family and community stress and isolation. We’re falling behind in access to professional services as clinicians and frontline workers leave their jobs or die during the pandemic. We need healthy, resilient, motivated, caring, young adults to survive. For them to survive and for our communities to survive. Toward a more profound understanding I want to better understand what life is like now as an emerging adult. I can remember myself as an emerging adult. But that was a long time ago. I’m still a two legged cis-gender old white man of privilege with all the implied limitations. I wanted to start this series on emerging adults with mental illness to better understand what it feels like and what people are going through. People with lived experience with mental illness and those that support them. What do they deal with? What forces are

Where do veteran advocates point people new to advocacy for skills, resources, and research? What are trusted resources? 15 interviews from Healthe Voices 22. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Prefer to watch the episode rather than listen? Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem Podcast intro 03:27 Sue Rericha 04:00 Sharnae Smith 04:33 Christine Von Raesfeld Hetlena Johnson 05:48 Brooke Abbott 06:22 Bethany Yeiser 07:41 Michele Nadeem-Baker 08:59 Jenna Green 10:50 Kara Beck 12:15 A word from our sponsor, Abridge 12:47 Jasmin Pierre 13:30 Alexis Newman 14:02 Ryan Williams 14:43 Andrew Schorr 16:04 Howard Chang 17:45 Rachel Star Withers 17:48 Reflection 18:22 Nuggets from the mine 19:55 Podcast Outro 20:55 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 or Twitter to @healthhats Credits Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Proem and Reflection music, Moe’s Blues, played by the Joey van Leeuwen Band Photo by Shane Rounce on Unsplash Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Estela Mata, Sharnae ‘Nae” Smith, Jim Snedden, Christine Von Raesfeld, Hetlena Johnson, Jason Crum, Jason Jepson, Brooke Abbott, Phyllisa DeRoze, Bethany Yaiser, Ken Taylor, Cindy Chmielewski, Jesus Guillen, Christopher Quibar, Stephanie Chuang, Michelle, Nadine Baker, Jenna Greene, Kara Beck, Jasmin Pierre, Sue Rericha, Alexis Newman, Ryan Williams, Sam Seavey, Andrew Shorr, Howard Chang, Rachel Star Withers Links Raw, unedited transcript of all responses to question #2 Healthe Voices website Facebook Bethany Yeiser CURESZ (Comprehensive Understanding via Research and Education in Schizophrenia). Mind Estranged: My Journey from Schizophrenia and Homelessness to Recovery Paperback – July 10, 2014 Lupus Foundation of America (LFA) Hetlena Johnson’s thelupusliar.com @thejennagreen Instagram Kara Beck @karabear_rny Instagram Schizophernia medication TAAR1 agonist NAMI (National Association for Mental Illness) Books on Alzheimer’s by Ryan Williams patient’s story Chronic Lymphocytic Leukemia The CLL Society CLL Women Strong Kicking Cancer in Heels National MS Society Andrew Schorr Patient Power Nuggets from the Mine Knowledge for Caregivers podcast   Related podcasts https://health-hats.com/pod180/ https://health-hats.com/pod182/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Whenever I go to conferences, I prepare two questions to ask people I meet. I don’t always ask those questions, but I like having them in my pocket. It ties the event together; I learn something, and I listen more than I might have without. Adding the feature of recording more strongly connects me to the interviewees. So, a pleasure to interview twenty-six people in five-minute interviews, although challenging to produce. Welcome to the third and final episodes created from the Healthe Voices 2022 Conference. I asked where do you point people new to advocacy for skills, resources, and research, to understand trusted sources better. See the previous quest

Time for gratitude and appreciation for what is. Update on Health Hats, the person, family, music, connection, and activism. New feature: Nuggets from the Mine Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode is best watched on YouTube Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) The awesome circus of life Podcast intro 02:11 Young adults with mental illness 02:46 Health communication 04:24 A word from our sponsor, Abridge 05:34 Video skills 06:18 My health 07:21 Nuggets from the mine 08:03 Remembering Michael Funk 09:55 Podcast Outro 11:20 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Photo of 2 wheel minivan from Unsplash. Couldn’t find reference. Photo by Elijah Hiett on Unsplash Photo by Nick Fewings on Unsplash 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) Sponsored by Abridge Inspired by and grateful to Ann Boland, Simon, Ruben, Oscar, Leon van Leeuwen, Kate Gleeson, Jessica Conaway, Anica Madeo Links Alt-Text as poetry strabismus surgery Nuggets from the Mine Those Nerdy Girls on Substack, Facebook, and website. Related podcasts https://health-hats.com/covid-19-people-living-safely/ https://health-hats.com/pod146/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show The awesome circus of life My dear readers, listeners, and watchers, do your heads spin as mine does in this awesome circus of life? So much to take in, process, and react to – or not. I don’t even pretend to keep up. My curiosity and fascination with life, people, stories, motivation, and connections continue unabated. I’m grateful to discover gobs of inspiring work almost every day. However, every few days, I need to integrate the shiny objects I discover and re-prioritize my activities. Before I tell you about some of my ongoing and upcoming projects, my activism focus has shifted. Not off patients and caregivers but realizing that I’m old. If I could have changed the world, it would have happened already. I don’t have the keys. I don’t have the energy to change the ‘system.’ I do have some experience, wisdom, and power – underline the some. Rather, I’m delighted to work with younger people who have different ideas, methods, and more energy than me. My priorities of self-care, family, music, podcasting and PCORI will go nowhere. Everything needs to fit into one or more of those buckets. Each bucket serves my activism. This episode fills you in on my status, doings, and musings. Every time I do one of these episodes about myself, I think, uh, who cares? But it seems like they get the most downloads and people tell me they really like ’em. So here’s another episode like that. Podcast intro Welcome to health hats, the podcast. I’m Danny van Leeuwen a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot of our very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of al

Patient advocates from the Healthe Voices 2022 conference describe how they recognize success in their advocacy.. Snapshots of diverse lived experiences. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem Podcast intro 01:51 Estella Mata 02:26 Jason Jepson 02:43 Sharnae Smith 03:08 Jim Sneeden 03:31 Christine Von Raesfeld 04:32 Jason Crum 05:02 Brooke Abbott 05:27 Bethany Yeiser 05:41 Ken Taylor 06:11 Cindy Chmielewski 07:17 A word from our sponsor, Abridge 08:51 Jesus Guillen 09:34 Christopher Quimbar 10:22 Stephanie Chuang 10:57 Michele Nadeem-Baker 11:55 Jenna Green 13:02 Jasmin Pierre 14:18 Sam Seavey 14:39 Rachel Star Withers 15:25 Reflection 16:19 Podcast Outro 17:35 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 or Twitter to @healthhats Credits Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Estela Mata, Sharnae ‘Nae” Smith, Jim Snedden, Christine Von Raesfeld, Hetlena Johnson, Jason Crum, Jason Jepson, Brooke Abbott, Phyllisa DeRoze, Bethany Yaiser, Ken Taylor, Cindy Chmielewski, Jesus Guillen, Christopher Quibar, Stephanie Chuang, Michelle, Nadine Baker, Jenna Greene, Kara Beck, Jasmin Pierre, Sue Rericha, Alexis Newman, Ryan Williams, Sam Seavey, Andrew Shorr, Howard Chang, Rachel Star Withers Links Raw, unedited transcript of all responses to question #2 Healthe Voices website Facebook Phyllisa DeRoze website re: Diabetes Diagnosed Not Defeated Bethany Yeiser CURESZ (Comprehensive Understanding via Research and Education in Schizophrenia). Mind Estranged: My Journey from Schizophrenia and Homelessness to Recovery Paperback – July 10, 2014 Ken and Barby’s International Pain Foundation Stephanie Chiang The Patient’s Story @thejennagreen Instagram Kara Beck @karabear_rny Instagram Books on Alzheimer’s by Ryan Williams Sam Seavy’s The Blind Life YouTube Channel Andrew Schorr Patient Power YouTube Video of this episode Related podcasts https://health-hats.com/pod180/ https://health-hats.com/but-you-can-total-self-care-at-13/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Several listeners asked, Danny, when did you first realize health was fragile? My parents and grandparents were Holocaust survivors. I attach a photo of my father’s father, Opa Henri, with my Uncle Nat when he returned home after being traded from Bergen Belson as a prisoner of war. Another long story. My mother never spoke of it when we were young, but my maternal grandmother, Lillie Herzog, and my father, Ruben, did. So, I learned much about the fragility of life from a young age. My father died at 45 when I was 19. That most life-changing event knocked my life into a new orbit. How do you recognize success in your advocacy work? In this episode, we listen to answers to the second question I asked of 26 people at the Healthe Voice Conference. Almost everyone answered some variation of I feel success when I affect one person’s life. I won’t repeat that response twen

Mighty Casey Quinlan, Healthcare Is Hilarious continues to cope with her breast cancer #MetsParty. We co-produce when her audience clammers for news and wit. SEE LINK TO YOUTUBE VERSION BELOW Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem Podcast intro 00:29 What’s new for Health Hats? 01:09 Casey’s health-kidney function 03:26 Casey’s health – chemo and radiation 06:00 Casey’s spiritual health 09:30 A word from our sponsor, Abridge 10:59 Recognizing success in advocacy 11:40 System change 13:24 Quantitative versus qualitative 17:13 Advice, oh wise woman? 17:59 Reflection 21:28 Podcast Outro 23:09 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 or Twitter to @healthhats Credits Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Geri Lynn Baumblatt, Jan Oldenburg, Janice Tufte, Regina Holliday Links Healthcare Is Hilarious Related podcasts https://health-hats.com/pod139/ https://health-hats.com/pod127/ https://health-hats.com/pod173/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem My dear friend, Mighty Casey Quinlan, of Healthcare Is Hilarious fame, continues to cope with her breast cancer #MetsParty. We co-produce an episode when Casey doesn’t feel well, and her audience clammers for news and wit. I recorded conversations that we both could use for our podcasts twice before. Let’s jump right into our chat. Podcast intro Welcome to health hats, the podcast I’m Danny van Leeuwen a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot of our very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this. What’s new for Health Hats? Mighty Casey: Hello, dear. How are you? What’s new? Health Hats: What’s new? I’m working on a series about young adults with mental illness. Mighty Casey: OK, That’s useful. Health Hats: Yeah, it’s been fascinating. Pulling it together and meeting people and thinking about its scope. And finding people with lived experience to share their stories so it’s rooted in reality. Mighty Casey: Yeah, exactly. What types of diagnoses are you finding most common? Health Hats: I don’t know what’s most common, but it seems like it’s going in two directions. One is with people with lived experience with some severe psychoses. And I found this organization called Students with Psychosis. It’s an international organization, and then I’ve been talking to primary care docs. I’m trying to line up an ED doc, and I’ve got some community organizations that coordinate services for teens. And then I got one of these referrals from somebody I respect. You’d be interested in this guy. And it was like cardiac rehab, and I wasn’t that interested. The person who referred me, I do respect,

26 patient advocates from the Healthe Voices 2022 conference describe the moment when they realized health was fragile. Snapshots of diverse lived experiences. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 2 Podcast intro 01:46. 2 Estella Mata 02:23. 2 Sharnae ‘Nae” Smith 02:42. 3 Jim Snedden 03:28. 3 Christine Von Raesfeld 03:48. 3 Hetlena Johnson 04:42. 3 Jason Crum 05:22. 4 Jason Jepson 05:57. 4 Brooke Abbott 06:26. 4 Phyllisa DeRoze 07:28. 4 Bethany Yeiser 07:49. 4 Ken Taylor 08:20. 5 Cindy Chmielewski 09:35. 5 Jesus Guillen 10:35. 5 Christopher Quimbar 12:31. 6 Stephanie Chuang 13:06. 6 Michelle Nadine Baker 6 Jenna Green. 6 Kara Beck. 6 Jasmin Pierre. 7 Sue Rericha. 7 Alexis Newman. 7 Ryan Williams 7 Sam Seavey. 7 Andrew Shore. 8 Howard Chang. 8 Reflection. 8 Podcast outro. 8 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 or Twitter to @healthhats Credits Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Estela Mata, Sharnae ‘Nae” Smith, Jim Snedden, Christine Von Raesfeld, Hetlena Johnson, Jason Crum, Jason Jepson, Brooke Abbott, Phyllisa DeRoze, Bethany Yaeser, Ken Taylor, Cindy Chmielewski, Jesus Guillen, Christopher Quibar, Stephanie Chuang, Michelle, Nadine Baker, Jenna Greene, Kara Beck, Jasmin Pierre, Sue Rericha, Alexis Newman, Ryan Williams, Sam Seavey, Andrew Shorr, Howard Chang Links Healthe Voices website Facebook YouTube Video of this episode Related podcasts https://health-hats.com/lead-by-example/ https://health-hats.com/but-you-can-total-self-care-at-13/ https://health-hats.com/gratitude-in-loss-together/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Hi. Each of us can remember a moment, an event, or a time in our life when we realized the fragility of health. The first question I ask many of my guests is, when did you realize health was fragile? Breaks the ice. It tells a brief story. And it shifts the brain from the nervousness of a recorded conversation to something personal. I recently attended Healthe Voices Conference sponsored by Janssen Johnson and Johnson Pharma. I. Janssen invited about 95 patient advocates for three days to network, learn, and party. What an opportunity. I brought my recording equipment and asked three questions. I asked, When did you first realize health was fragile? How do you recognize success in your advocacy? When you meet a newbie advocate, where do you point them for skills, resources, and research? I spoke with 26 of the participants for about five minutes each resulting in over two hours of recording. I can’t include all four topics in one episode. So, in this episode, I’ll share when people first realized health was fragile. I’ll cover the others in subsequent episodes. For this episode, listening to the podcast audio will suffice, but seeing a snapshot of the speaker’s beautiful faces might be nice. So read the transcript or watch the video on my YouTube channel. Thanks. Pod

Dr. Kiame Mahaniah, CEO, values his FQHC staff; feels for pts’ life challenges; understands what he can control & can’t; & weeps for under-realized potential. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 2 Introducing Dr. Kiame Mahaniah 01:40. 2 Health Hats, the Podcast process and status 02:40. 2 Podcast intro 03:57. 2 Health is fragile. Falling through the cracks. 04:34. 2 The health system. Not random. 06:47. 3 Performance improvement – opportunities in the cracks 07:56. 3 CEO: care that meets people where they are 10:33. 4 CEO: setting priorities 13:08. 4 CEO: cheerleader 13:46. 5 CEO data and safety 14:47. 5 Getting stuff out of staff’s way 15:29. 5 Progression to CEO 17:31. 6 Integration of behavioral and physical health 19:51. 6 Succeeding 60% of the time 23:16. 7 One-on-one visits – why? 24:40. 7 Impact of snow removal or not 25:30. 7 Sponsor 26:43. 8 Staff retention. Pay, fatigue, epidemic 27:24. 8 Long queues for services 31:00. 9 The stress you can manage 31:53. 9 Staff morale – can’t help everyone who needs help 33:05. 9 Investing in training, like cops and soldiers 33:56. 9 Free market? 34:57. 10 Miss being a frontline clinician? 36:29. 10 Staying in touch with the front lines 38:24. 11 Reflection 40:02. 11 Outro 41:10. 11 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 or Twitter to @healthhats Credits Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Ellen Schultz, Janice John, Jamila Xible, Kerstin Meisinger, Bevin Croft, Russell Bennett, Lisa Masinter, and Michele Whitt. Links Lynn Community Health Center Health Resources and Services Administration (HSRA) Abbott and Costello’s Who’s on First Related podcasts https://health-hats.com/pod133/ https://health-hats.com/pod112/ https://health-hats.com/pod155/ https://health-hats.com/pod150/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem As a student of leadership, I relish experiencing, hearing about and from good, no great, leaders. I worked for several. Sometimes I was one. What makes a good/great leader? They strategize with their team and customers, encourage, and appreciate their staff, hire for diversity of lived experience and ways of thinking about the world, and get stuff out of the way of good people doing their good work. Introducing Dr. Kiame Mahaniah My friend, Dr. Kiame Mahaniah, a good/great leader is CEO of the Lynn Community Health Center, a Federally Qualified Health Centers (FQHC) near me. Kiame and I meet monthly in a book club and often discuss health care, health care advocacy, and issues of health equity FQHCs sit on the sharp point of health equity and community-centered care. Need a barometer of the health of our healthcare system? Check out your local FQHC. According to the Health Resources and Services Administration (HSRA), FQHCs are community-based and patient-directed organizations that deliver comprehensive, culturally compe

Building a powerhouse advocacy org for young adults with chronic conditions, Sneha Dave shares her path & vision: skill building, peer support, events, policy. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem Introducing Sneha Dave 00:57 Podcast intro 02:04 Health is fragile 03:01 Transition from pediatric to adult medical care 04:47 Transition in agency, decision making 06:28 Transition from navel-gazing to community focus 08:39 Building community – Generation Patient 10:21 Managing yourself while advocating 12:54 Yikes, it’s a business, too 15:31 Scope – Higher education 18:35 Scope – Peer support 19:33 Scope – Events 21:21 Scope – policy 23:43 Policy – FDA User Fee Agreements 25:22 Policy – Direct-to-consumer advertising 26:47 Policy – State-based drug pricing 27:47 Crohn’s and colitis young adults’ network 28:18 Patients launching research 29:44 The challenge and benefit of keeping your ear to the ground 38:00 Reflection 41:48 Podcast outro 42:47 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Janice Tufte, Robin Newhouse, Aaron Carroll, Sara Lorraine Snyder, Morgan Gleason, Marlajan Wexler, Fatima Muhammed Ighile, Lauren Reimer-Etheridge, Mallory Smith, Jill Woodworth, James Harrison Links Generation Patient, Empowering Young Adults with Chronic Medical Disabilities A New Generation in the Fight for Fair Drug Prices Inflammatory Bowel Diseases Camp Oasis, a camp for kids with Crohn’s and colitis Ehlers Danlos Syndromes Postural orthostatic tachycardia syndrome Helmsley Charitable Trust PDUFA prescription direct user fee agreements 2022 PCORI Annual meeting ICER’s Midwest CPAC Midwest Comparative Effectiveness Public Advisory Council Aaron Carroll’s Incidental Economist Janice Tufte of Hassanah Consulting Related podcasts https://health-hats.com/ya_transition/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem In my first professional job as a Visiting Nurse in Holyoke, MA, in 1976, I wanted to establish a walking practice in the inner city. Veterans on the team said it’s not safe and can’t be done. “What do you mean it can’t be done? Of course, it’s safe. It can be done!” I was so young, 24. Now I’m usually the oldest in the room (unless I’m with my wife, who’s older than me). I thrive on youthful energy, people who take up the mantel of progress and charge forward with an energy I only faintly remember. Energy, ideas, single-minded stubbornness, connections into a world I possess only faint familiarity. Introducing Sneha Dave Janice Tufte of Hassanah Consulting knows my appreciation for young adults with chronic and complex challenges and disabilities and my fascination with business-successful advocacy organizations financially independent of pharma and industrialized medicine. Janice introduced me to Sneha Dave, 25, CEO of Generation Pat

Chat with Isabelle Barbour, Truthteller Consulting, about partnerships, community advocacy, privilege, disparities, trust, and being your best self. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 2 Introducing Isabelle Barbour 01:11. 2 Intro 02:23. 2 Health Improvement Collaborative of Southeast Connecticut 02:59. 2 Writer’s Block & SCORE 04:59. 3 Collaborations 06:32. 3 Partnership grants – Mini-grant Funding 08:14. 4 Partners, grantees, power – Be the change 11:25. 4 Needing help, asking for help, accepting help 14:11. 5 Vulnerability, humility 17:50. 6 Earn respect. Practice being our best selves 22:20. 6 Disparities in research 26:14. 7 Leveraging privilege 27:25. 7 I already drank the Kool-Aid. Now what? 31:23. 8 Partnerships between communities and researchers 33:48. 8 Move at the Speed of Trust 36:59. 9 Maternal health 39:32. 10 Vulnerability and partnerships 40:52. 10 TruthTeller Consulting 42:17. 10 Take a step back to reflect 43:02. 10 Keeping my ear to the ground 44:32. 11 Managing with my brain as it is 46:30. 11 Nourishing the brain 48:50. 12 Try something else 50:04. 12 Reflection 53:12. 13 Outro 13 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Turn Your Love Around by George Benson played by Saturday Afternoon Blues Funk Combo at Common Ground on 12/07/2019 with Lenni Webber on keyboard and vocals, Bruce Hoppe percussion, Eric Solomon bass, Peter Cicco guitar, Glen Alto guitar, Danny van Leeuwen bari sax Breaks played by Danny van Leeuwen on bari sax Photo by Shane Rounce on Unsplash Photo by J W on Unsplash Photo by Hush Naidoo Jade Photography on Unsplash Photo by Priyanka Singh on Unsplash The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Ellen Schultz, Neely Williams, Fatima Muhammed Ighile, Jan Oldenburg, Jodyn Platt, Dr. Lisa Masinter, Dr. Michele Whitt, Kristin Carman Links TruthTeller Consulting Health Improvement Collaborative of Southeastern Connecticut. Robert Wood Johnson Foundation Writer’s Block SCORE PCORI solutions to create, catalog, and disseminate public engagement tools 2 min trailer Related podcasts https://health-hats.com/pod133/ https://health-hats.com/minister-to-community-spirit/ https://health-hats.com/trust-willing-to-be-vulnerable-worth-the-investment/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem A community learned that theirs’ was the county with the country’s most pedestrian/auto accidents and deaths per capita. People came together, identified high-risk intersections, and began to study traffic patterns. Some researchers and media and artificial intelligence techies joined the group. They placed video cameras on utility poles and designed software to crunch the hours of media data to find patterns. Then they moved the set-up to other high-risk intersections. A local problem, solved by the community, automated, and shared: my first appreciation of community-focused research and

Music in my life. Adjusting to changing abilities with my bari sax. An experiment in multimedia sharing. Listen, watch, read. Best to watch the YouTube video. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode is best watched on YouTube Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Danny on Bari sax music playing in the background, sitting, using a strap to hold the horn Proem Playing and not playing with Multiple Sclerosis 03:53 Eureka, a Sax Stand 06:06 Reading sheet music with double vision 10:10 Need help, ask for help, get help 14:12 Looking ahead 15:13 Lechuga Fresca 16:24 Prequel 18:11 Cold Sweat 21:20 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion 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) Sponsored by Abridge Inspired by and grateful to Jeff Harrington, Joey van Leeuwen, Kayla Nelson, Kristina Johnson, Larry Mazza, Peter Cicco, Dan Fox, Glen Alto, Josh Rosenstock, Betsy Neptune, Andrea Condit, Cornell Coley, Stephen Debenectis, Jon Fraser, Bruce Hoppe, Gabrielle Pitman, Eric Solomon, Ryan Vasios, Karen Welling, Harry Wolfson, Cynthia Meyer, Cherie Binns, Carol Band, David Bourne. OMG, what a list! Links Enabled Disabled Project Lechuga Fresca – Cool as a Cucumber Morningside Studios Second Wind Movement Al Gallodoro Related podcasts https://health-hats.com/listen-to-the-music/ https://health-hats.com/pod134/ https://health-hats.com/pod146/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Danny on Bari sax music playing in the background, sitting, using a strap to hold the horn Proem I recently joined the Enabled Disabled Community, hosted by Gustavo Serafini. They asked me to tell them more about my sax playing as a person with disabilities. Aha, a podcast episode! What a challenge – audio, video, and print media all in one for people who follow me and those who don’t know me. Here goes. For those who don’t know me, I’m a bald, hat-wearing, two-legged, cisgender, old white man of privilege with secondary progressive Multiple Sclerosis. I’m a two-forearm crutch / electric wheelchair kind of guy, although I can walk without in our two-bedroom 950-square-foot flat if I can spot touch or hold on. I try to walk 3,500 steps a day with my forearm crutches. When diagnosed with MS, my neurologist said he had nothing for me better than playing the bari sax. Playing bari kept my lungs solid since I have intercostal muscle involvement (breathing). With the big heavy keys on my bari, my dexterity maintains, and music creates new brain pathways in my Swiss cheese brain. Cool, eh? In this audio/video/print mashup, I’ll play more for you than I’ve ever done on my podcast—a sign of my growing self-confidence. I will play, share some history, and show you my setup, including some clips of Lechuga Fresca, the Latin Band I currently play in, and the Saturday Morning Funk Band from 2015. Please note that the music for my intro and outro are done by my cousin, Joey van Leeuwen and his New Orleans band. I recommend you check out the linked show notes and watch the YouTube v

Research matters to people where they live, work, play, worship, and learn. What questions do they ask? Will Parente, a bridge between firefighters and research Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Will Parente 02:17. 1 Research topic #1: Carcinogens in fire retardants 04:22. 2 #2 The cost of healthcare for first responders 07:02. 3 Burn pit PACT bill for veterans 08:58. 3 First responder and researcher hats 10:09. 3 Research to inform policy 11:28. 4 Community firefighter, wildland firefighter 13:36. 4 Funding for firefighting research 16:10. 5 The bridge again, between research and first responders 17:57. 5 Reach out to legislators and decision-makers 20:20. 6 Reflection 22:17 7 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Garth Roberts, Laura Marcial, Ellen Schultz, Russell Bennett, Matthew Hudson, Kirsten Meisinger Links RTI International HEART-HEALTHY FIREFIGHTER PROGRAM PFAS or PFOA National Fallen Firefighters Foundation US Fire Academy NFPA Research Foundation. National Fire Protection Association National Institute Standards and Technology North Carolina Department of Insurance HERO Fund America FEMA Emergency Management Institute: https://training.fema.gov/ DHS Disaster Response and Recovery: https://www.dhs.gov/disaster-response-and-recovery FirstNet: https://www.firstnet.com/ wildland-urban interface Related podcasts https://health-hats.com/pod137/ https://health-hats.com/pod133/ https://health-hats.com/zen_relationshipcentered_measure/   About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem My son, eight or nine years old, called me at work. “Dad, everybody’s OK, but you need to come home. There’s been a fire.” I was an Emergency Department nurse in rural West Virginia. The local volunteer firefighters put out a rapidly escalating brush fire around our house. I became a nurse in 1975 and worked in home care for a few years in Western Massachusetts. When we moved to West Virginia as back-to-the-land hippies in an intentional community, I realized I knew little about responding to a family or community medical emergency. So, I became an EMT (Emergency Medical Technician) and then a paramedic, a volunteer first responder to accidents, heart attacks, fires, sudden births all sorts of medical emergencies. When we left West Virginia after twelve years, I stopped my first responder work and slowly pushed those days out of my mind. I’m a fan of Jon Stewart. I followed the Daily Show for many years. I still follow the Daily Show. I especially appreciated Jon’s rabid advocacy for 9/11 first responders’ health care. Once again, my eyes opened. Now I’m eyeballs deep in community-centered research. Research that matters to people where they live, work, play, worship, and learn. What questions do first responders ask that research could contribute answers? How do we stay safe, maintain baseline hea

BUILD provides opportunities for young adults to find their footing and self-confidence through entrepreneurship. We need them. Betsy Neptune tells us more. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Betsy Neptune 01:05. 1 BUILD, Becoming CEO of your life 04:51. 2 Pitching products, services, yourself – Life skills 06:38. 3 How do I know this could help me? 08:10. 3 Mentorship 08:52. 4 Community integration 11:05. 4 Building resilience, managing manageable stress 11:51. 4 Cushion to fail 13:43. 5 $50 seed 15:20. 5 Raw talent, practice, put in the time 15:57. 5 Universal skills – just do it, follow through 18:07. 6 The health connection 20:47. 7 Reflection 23:04. 7 Pablo Pueblo with Lechuga Fresca Latin Band 32:22. 8 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Jimmy Clare, Sara Lorraine Snyder, Jan Oldenburg, Lauren Reimer-Etheridge, Morgan Gleason Links BUILD.org national BUILD Boston Lechuga Fresca – Cool as a Cucumber Related podcasts https://health-hats.com/ya_transition/ https://health-hats.com/pod153/ https://health-hats.com/pod117/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem I feel joy when my many worlds overlap, collide, and mush together. Upon reflection, of course, how could they not? Health touches everything, especially in its absence. Music feeds and soothes the soul (unless it grates). Health starts before birth and continues through actualization. When I met Betsy Neptune as a conga player and vocalist in the Latin band Lechuga Fresca, I didn’t know she was Executive Director of Boston BUILD, an entrepreneurship program for underserved high school students that teaches them how to build their own business while becoming the CEO of their own lives. Youth, entrepreneurship, self-care, self-confidence, equity, and inclusion – magic levers of best health. Introducing Betsy Neptune Betsy Neptune comes to BUILD with over 15 years of experience in community economic development in Latin America and the U.S. She is passionate about creating a world where everyone can have a job that they love and one through which they can grow and develop to have a positive impact. In her most recent role as the Chief of Economic Development for the Metropolitan Area Planning Agency, she led economic recovery and resilience efforts for 101 cities and towns in Greater Boston. During her tenure, she expanded the team’s work beyond traditional economic development efforts to include workforce development, digital access, and other strategies to advance wealth creation, focusing on reducing the racial wealth gap. Her team played a crucial role in COVID response and recovery efforts throughout the Greater Boston region. Her work is shaped by her experiences working in community economic development for several years in Ecuador, Peru, and Chile. Betsy has a heart for teaching, coaching, and entrepren

10 years of blogging and podcasting. Planting, fertilizing, growing, harvesting. Questions asked and answered about process, motivation, and future direction. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Roots, stems, and branches 01:49. 1 Fertilizer 04:02. 1 Harvest 05:14. 2 Where, from here? Creative experimentation. 07:30. 2 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion 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) Sponsored by Abridge Lechuga Fresca Looney Tunes: That’s All Folks Photo by Jeremy Bishop on Unsplash Inspired by and grateful to Jane Sarasohn Kahn, Eric Pinaud, Jody Buckingham, Steve Heatherington and all my podcasting peeps Links Health Hats YouTube trailers Salmagundi Hat Shop in Boston Healthcare is Hilarious hosted by Health Hats Recommended podcasts Alpaca Tribe This is the place for people who connect with alpacas, so I guess that means you. The Alpaca Tribe podcast shares conversations with people on their own alpaca journey, providing wisdom, insight and great stories about alpacas. Healthcare Triage In partnership with the National Institutes of Health, we’ve launched a new series on the culture of science and reproducibility. Healthcare is Hilarious Snark about healthcare – who can’t use some of THAT? Hansel and Gretel Code Sussing out the meaning in fairy tales Miss Panda Miss Panda Chinese makes learning Mandarin simple and playful for non-native and heritage learners from the very beginning! Talaterra speak earth to your neighbors. create a global impact. A History of Rock Music in 500 Songs The title says it all Enabled Disabled Created for people with disabilities, as well as their families, friends, clinicians and therapists. Related podcasts https://health-hats.com/best-health-different-lens-different-point-of-view-2/ https://health-hats.com/best-spiritual-health-dying/ https://health-hats.com/pod171/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem A slew of questions about my podcasting process came across my channels after I published episode 171: 50 and 70. Connection and Age. Spiritual Strength. How big is your team? Do you use a service to recruit guests to interview? Who does your editing? How many months do you take to produce an episode? Who project manages for you? Do you ever engage guest hosts? How long have you done this? How much do you make at it? Aren’t you bored after three years and 171 episodes? Why do you bother with music? Isn’t that more work? You seem to experiment a lot. Where are you going next? Roots, stems, and branches Woah, those questions cover a lot of territory. Let’s start with the easy ones. My production team is me, myself, and I with assist from my social media, web coach, Kayla Nelson, in northern Minnesota, who is my everything help desk and creates the weekly trailers. I manage and complete production myself. I’ve never engaged a guest host, but I’m not opposed. I have guest hosted for podcasting cronies, like Mighty Casey Quinlan

Cost & quality. Compare & risk adjust. Measurement that serves people is complex, fraught, in its infancy. Chat with Dr. Bob Phillips to make some sense of it. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Bob Phillips 01:42. 1 Tension between accessibility and continuity 05:17. 2 Comparing and burnout 07:15. 3 Measuring what’s important? 08:30. 3 Care Compare.gov. Primary care referral. 10:10. 4 Comparing quality in its infancy 11:54. 4 Trust, always trust 13:44. 5 Cost, always cost 15:26. 5 Risk adjustment for payment 18:02. 6 Risk adjustment for quality 22:39. 7 Census tracts 23:45. 7 Risk adjustment controversy – one hand gives, and the other takes away 25:36. 8 Measures across time 26:47. 8 Reflection 29:56 9 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Bill Lawrence, Matthew Hudson, Matthew Pickering, Robyn Tiger, Cheryl Damburg, Adam Thompson, Jennifer Bright Links Center for Professionalism & Value in Health Care at the American Board of Family Medicine Foundation COGME (the Council on Graduate Medical Education) Population Health on the National Committee on Vital and Health Statistics Relationship Between Physician Burnout And The Quality And Cost Of Care For Medicare Beneficiaries Is Complex Care Compare Yelp for physicians Person-centered Primary Care Measure hospital price transparency Risk adjustment: what is it and how does it impact Healthcare for 2022. Census tracts The Joint Commission certifies hospitals and health care facilities, National Commission for Quality Assurance (NCQA) certifies health plans The Joint Commission certifies healthcare providers Related podcasts https://health-hats.com/pod145/ https://health-hats.com/pod163/ https://health-hats.com/pod160/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem This week I compared large screen monitors, care planning apps, clinicians, vacation packages, and high-end chocolate – all efforts of privilege, except the clinicians. I can afford them; I don’t really need them. I actually purchased nothing. Mostly, I’m curious about comparing apples to apples, enough information, marketing to emotion, marketing with facts. I also attended a day-long cost measure meeting, the NQF (National Quality Forum) Cost and Efficiency Measure Standing Committee. This meeting evaluates measures that Medicare uses to compare physicians performing common high-cost surgeries: heart surgery, hip replacement, and spine surgery. Ideally, we compare to find the best quality, lowest cost, and most accessible – whether it’s surgery, monitors, apps, vacations, or chocolate. The more I explore comparison, the less I know. I asked around, and Bill Lawrence at PCORI (Patient-Centered Outcomes Research Institute) referred me to Bob Phillips. Remember that links to organizations, articles, and concepts can be found in the transcript and show notes

2-legged, cisgender, white man of privilege turning 70 enjoying life with friends of 50+ years. Still kicking-sort of-still enjoying life. Intentional families. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Old friends, old me 00:37. 1 Podcasting to learn, connect, philosophize 02:40. 2 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion 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) Sponsored by Abridge Inspired by and grateful to YOU Links Related podcasts https://health-hats.com/retirement-micro-stepping-with-mini-goals/ https://health-hats.com/nowhere-in-an-hour/ https://health-hats.com/gratitude-podcasting-best-health/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Old friends, old me I took a week off to vacation in wild, wonderful West Virginia. We rented a camper van, drove to our old stomping grounds in Lewis and Braxton Counties and partied with friends we’ve known for 50 years. My wife and I go back 50 years. Aging fascinates me. My grandson sort of thinks I’m old. I told him that the 11-year-old me looks out of these 70-year-old-eyes sometimes. He said he could understand that – sort of —what a guy. A few weeks ago, at a block party gig with Lechuga Fresca, my Latin Band, I watched three 10-11-year-old girls skipping down the street. I thought, but didn’t say out loud, you might be 70 one day. The perseverance to know people for 50 years also intrigues me. Several smaller groups of this tribe grew up together in widely dispersed locations, Detroit, Buffalo, and Woodridge, NY. The groups connected happenstance – meeting while hitchhiking, at college, at concerts. We cross-pollinated and married across groups. We’ve been present for each other through births, deaths, marriages, breakups, diagnoses, and kids. As expected, we now talk about retirement, accessible travel, aches, pains, bodily functions, and our grandchildren, not so much politics. We know the good, the bad, and the ugly of each other and still stay connected. We challenge each other toward meaningful work and meaningful lives. Our children’s cross friendships help maintain our bonded inertia. Podcasting to learn, connect, philosophize Goodness, I’m podcasting again about family: blood family and intentional families. You know my mantra: spiritual health trumps mental health trumps physical health. All my families help to sustain my spirit. Turning 70 (on July 17th) will bring on reflection for a philosophical person like me. You might also notice that I’ve become more relaxed about my podcasting. While I still have several interviews in the can ready to produce and several more interviews in the works, I’m no longer a reliable weekly podcaster. Now on episode 171, I’m not pushing myself as much. There’s much to do in the rest of my life – consulting, PCORI, music, and reading. The episodes will come as they come. My readership and listeners continue to increase slowly, just as I like it. I still find that podcasting nurtures me to learn, connec

Introducing 3 generations of Danny van Leeuwen’s. Inclusive, blood, intentional family lore. Spiritual health can come from family. From the Holocaust to today. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)   Proem.. 2 Catching up 02:29. 2 We’re all three well partnered 03:22. 2 Forgetfulness runs in the family 04:27. 3 The meaning of our name 05:07. 3 Music in our lives 07:08. 4 Uncle Danny’s feeling it 09:22. 4 The team: care coordination and family 10:21. 5 Sleep 13:04. 5 The life of Danny III 14:06. 6 Joey van Leeuwen 15:16. 6 Visiting Morocco 18:06. 7 Danny III’s health 20:32. 8 Travel and language 22:47. 8 More about Morocco 23:34. 9 Uncle Danny, tell us a story 24:30. 9 Opa returning from the concentration camp 26:00. 10 Israel and the Kibbutz 27:28. 10 Screwed up paperwork 29:26. 11 First meeting my Uncle Danny 30:48. 11 My dad, Ruben van Leeuwen 31:47. 12 Uncle Danny’s first wedding 32:34. 12 Danny III’s calming voice 33:24. 12 Uncle Danny’s 90th Party 34:40. 13 Concentration camp, faith, draft counseling 35:13. 13 We’re van Leeuwen’s 39:40. 14 Uncle Danny in Jerusalem 42:19. 15 Reflection 45:03. 15 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Henri B, Evaline, Nathan, Kato, Leon, Ruben, Daniel, Lea van Leeuwen   Links Crescendo Baby Music on a Facebook page Danny III on SoundCloud, Fireship first recorded by (the Weavers) Peter Paul and Moses playing Ring Around the Roses. September Song. City of Chefchaouen Rabat kibbutz Unilever Kathy’s Consulting Related podcasts About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem I talked about the magic levers of best health in my first blog posts in 2012 – ten years and 535 posts and episodes ago—pretty mundane stuff – hydration, rest, diet, exercise, and team. The most important team – you and yours, family, however you define that. I am a van Leeuwen. That’s my blood and relations family. We are a kooky, solid, kid-oriented, widely dispersed, mostly get along sometimes, clan. I’m proud to be a van Leeuwen. I take the opportunity to introduce some of my family – the three Dans. My Uncle Danny just turned 90. The youngest of six, the patriarch, lives in Utica, NY, with his wife, Beth. He’s had four heart bypasses, and until a few years ago, he played basketball every week and, recently, pickleball. Covid set him back. Strength of spirit is a van Leeuwen trait. I, Cousin Danny, almost 70, live in Arlington, MA, with my wife, Ann. You know me already. My cousin David’s son, Danny III, 26, lives in Morocco with his partner, Leslie, and teaches music. Three generations of Dans. Danny Health Hats: All right. So here we are. The three Dans, Danny. We’ve got an old fart, a middle fart, and a young fart. Danny III: Yes, and a cat. Danny Health Hats: Uncle Danny, how are you feeling? Uncle Danny: Slowly getting there. I regressed. I got better. I was playing pickleball, then

Patients, care partners & clinicians can reduce record errors with collaborative notes. Dr. Peter Elias shares his note-writing with collaborative partners. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Peter Elias 01:41. 2 Medical documentation over the years 02:42. 2 Records go from paper to electronic 05:55. 3 Copies of doctors’ notes to patients, sometimes 7:16. 3 Always 10:28. 4 Patients feel reassured 11:21. 4 Care planning and collaborative notes 12:20. 4 Challenging conversations 12:46. 4 Families, records, getting it right 14:00. 5 Using a scribe to assist with documentation 15:16. 5 Misdiagnosis and long-standing error 16:24. 5 Preserving data, accurate data, workarounds 18:02. 6 Insurance companies 20:24. 6 Open Notes, relationships with clinicians 21:27. 6 Not at your best at the doctor’s office 22:13. 6 Getting the most out of it 24:10. 7 Coaching other docs 25:04. 7 Emerging issues 26:40. 8 For other clinicians 27:36. 8 Reflection 29:12. 9 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Liz Salmi, Tom Delbanco, Danny Sands, Janice Tufte, Alexis Snyder, Jan Oldenburg, Virginia Lorenzi Links Society for Participatory Medicine How accurate is the medical record? A comparison of the physician’s note with a concealed audio recording in unannounced standardized patient encounters in the Journal of Informatics in Health and Biomedicine How to Correct Errors in Your Medical Records Correcting Errors In the Electronic Medical Record Impact of Electronic Health Record Systems on Information Integrity: Quality and Safety Implications Beat cancer? Your Medicare Advantage plan might still be billing for it. Related podcasts https://health-hats.com/pod168/ https://health-hats.com/opennotes-a-gold-mine-of-community-organizing/ https://health-hats.com/misdiagnosis-how-can-patients-help-doctors/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Expecting an error-free medical record seems unreasonable – too many opportunities, too many forces, too many players, too many perspectives. Not having error prevention and correction hardwired into our workflow and documentation processes also seem unreasonable. Last week we spoke with Virginia Lorenzi about technical solutions to correcting errors in medical documentation. Virginia talked about information system solutions to aid human problems and solutions and understanding the different types of errors. This week I read an article in the Washington Post about mining records for outdated data to enhance billing. Another level of error. As with any concern, the more you discover, the less you know. I do know that the endpoint is best health. Going upstream – best health includes community and personal habits, which comprise care, treatment, and policy decisions. Upstream from that is analysis and interpretation of data and at the source is data itself, the mo

How can medical document errors become easy to fix, everywhere the error lives, & fit in the workflow? Virginia Lorenzi and HL7’s Patient Empowerment Workgroup. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Virginia Lorenzi 03:31. 2 HL7’s Patient Empowerment Workgroup 04:56. 2 An intelligent customer understands some of the technical 05:45. 2 Requests for corrections – a sign of engagement 07:12. 3 Fixing errors – from the fifties 08:01. 3 Patient satisfaction and errors 09:30. 4 Release more information, find more errors, feel worse 10:07. 4 Burden on clinicians, burden on patients 11:42. 4 What if you could push a button and start and track the correction process 12:12. 4 Connectathons – a meeting of the minds in a sandbox 13:17. 5 Making decisions about data standards 15:32. 5 Eureka, we have standards. Now, who’s going to use them? How easy can we make it? 18:41. 6 An error is not an error, is not an error 21:11. 7 Ink on paper 24:07. 7 HIPAA-federal rules about requirements to correct errors 26:38. 8 Misdiagnosis – Out damn spot! 28:54. 9 Impact of errors 32:07. 10 Motivation to fix errors 33:50. 10 Reflection 38:44 12 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Cohelo as originally played by Mandrill, here played by Lechuga Fresca Latin Band, Danny van Leeuwen soloing on Baritone Sax Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Liz Salmi, Tom Delbanco, Peter Elias, Grace Cordovana, Dave DeBronkart, Debi Willis, Laura Marcial, Bryn Rhodes Links How accurate is the medical record? A comparison of the physician’s note with a concealed audio recording in unannounced standardized patient encounters in the Journal of Informatics in Health and Biomedicine the Patient Empowerment Workgroup HIPAA, you have a right to get your record fixed HIPAA rule says that if a record is amended or if a record amendment the 21st Century Cures Act. the Patient Requests for Corrections FHIR Implementation Guide United States Core Data Set for Interoperability. How to Correct Errors in Your Medical Records Correcting Errors In the Electronic Medical Record Impact of Electronic Health Record Systems on Information Integrity: Quality and Safety Implications IHE Connectathon: A Unique Testing Opportunity Late addition: Beat cancer? Your Medicare Advantage plan might still be billing for it. Related podcasts https://health-hats.com/pod158/ https://health-hats.com/opennotes-a-gold-mine-of-community-organizing/ https://health-hats.com/misdiagnosis-how-can-patients-help-doctors/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem My father died when he was 45 of his second heart attack. I have multiple sclerosis. These don’t seem connected. Heart disease is hereditary, but MS isn’t. For me, heart disease and MS still connect. They connect because when I got diagnosed with MS, the neurologist said I’d had had MS for 25 years. I would have repeated episodes o

An epidemic of burnout among health workers. Learn about the American College of Lifestyle Medicine’s solutions 6 pillars and 3 teaching axioms from Dr. Robyn Tiger. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Dr. Robyn Tiger 01:05. 1 A complex case physical, mental, spiritual 02:56. 2 The practice of Lifestyle Medicine 06:09. 2 Eureka 09:00. 3 Manage manageable stress 09:50. 3 Forming good habits 12:19. 4 Should, why, how 14:33. 4 Burnout among family caregivers 16:40. 5 Accessing Lifestyle Medicine 18:52. 5 Getting to how 22:21. 6 Burnout – personal and system issues 23:46. 6 Global celebration 24:18. 7 Reflection 26:28 7 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Geri Lynn Baumblatt, Mary Anne Sterling, Lisa van Leeuwen, Mark Heyward Johnson, Smitty Heavner, Chris Friese, Jane Sarasohn-Kahn Links American College of Lifestyle Medicine stressfreemd.net to reach Dr. Robyn Tiger Lifestyle Medicine Week annual lifestyle medicine conference in Orlando NAM Clinician Well-Being Collaborative National Plan for health workforce well-being, Health Populi As Americans Start to Return-to-Work in the Summer of COVID, Mental Health is a Top Concern Among Employers The ramifications of health care worker burnout Related podcasts https://health-hats.com/help-the-helpers-care-for-healthcare-workers-now/ https://health-hats.com/help_the_helpers_in_crisis/ https://health-hats.com/difference_collaborative/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem On the second day of my first management gig as nurse manager of an ICU, I noticed that staff nurses seldom took breaks (bathroom or meal). Surprised that this would be the reason for my first impromptu staff meeting, I was astounded to learn about the resulting high incidence of bladder infections. “We are smart people. We can figure out how to design workflow, so everyone gets breaks.” So, 1987, my first awareness of burnout. No breaks, ill health, and stress all lead to burnout. Today, in COVID-world, the epidemic of burnout among healthcare workers appears in high relief. Not new, but in the headlines. Introducing Dr. Robyn Tiger I met today’s guest, Dr. Robyn Tiger, through Kelly Freeman and Alex Branch at the American College of Lifestyle Medicine. I met Kelly because of my interest in the science of healthy habit formation and the reduction of burnout among clinicians and family caregivers. Robyn Tiger, MD, is on a mission to empower physicians with self-care tools backed by science and research. With physician burnout on the rise, Robyn knows firsthand what it’s like to love your job while coping with stress, anxiety, imbalance, and even illness. Robyn, Dr. Tiger, is the lead faculty and subject matter expert in stress management for the American College of Lifestyle Medicine. Robyn is currently editing and creating the new board review materials for the

Managing rural and urban travel with my set of abilities. Roots, dips, inclines, Roman roads, elevators. falls. We did 170 miles (I did 70). A hoot and a half. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)   Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion 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) Sponsored by Abridge Inspired by and grateful to Linda and Mike DeRosa, Kate Higgins, Mary Lawler, Ann Boland, Ed Lomotan, Kara Ayers, Carole Blueweiss, David Bourne, Simon van Leeuwen, Portugal Green Walks, Progressivecare, LDA Links Portugal Green Walks The Camino de Santiago for People with Disabilities Walk the Camino. Customers with Disabilities Accessible Camino   Related podcasts https://health-hats.com/pod165/ https://health-hats.com/pod164/ https://health-hats.com/pod162/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show I’m back. What an adventure along the coast of Portugal and Spain to Santiago de Compostela. I have hours of material that I will produce over the next few months. Today, a very brief episode about accessibility. Remember, I have Multiple Sclerosis, which affects my stamina, balance, and vision. I can stand, I can walk. Unless I’m in a small room, I need forearm crutches for walking or an electric wheelchair. I can fold my wheelchair, roll it, and assist in getting it in and out of the car. I am not wheelchair dependent. I walk a minimum of 3500 steps a day, every day. Not all at once, but in segments. I fatigue, but I can recover relatively quickly. I manage my double vision, most of the time. I can hear with hearing aids, sometimes too much. I can breathe, talk, eat, and toilet unassisted. My disabilities and pain levels are mostly moderately annoying. I describe a personal adventure with my extended family and those I’ve met along the way. Clearly, your adventure would be different. People with all ranges of abilities travel the Camino. Preparation and assistance are key. See several resources in the show notes. My companions and I are all 70+ years old. During these 16 days, we traveled about 160 miles (260 km) on the Camino de Santiago Pilgrimage from Porto, Portugal. I went 70 miles (113 km), averaging 4600 steps or 2 miles a day walking and the rest in my electric wheelchair. I had help finding accessible ways and maneuvering. We dealt with roots, ditches, streams, stairs, sand, gravel, slippery slopes, and other obstacles in rural areas. I fell over backward in my chair once. I’ll put a link in the show notes to YouTube of it. I was recording at the time of the fall. In urban areas, we scouted cutouts, maneuvered around construction, crazy traffic on narrow roads, crowds, stores, restaurants, churches, and cathedrals. And OMG, the elevators – tiny, tiny, tiny. Find one elevator experience linked to YouTube. The image for this episode is of one ridiculous cutout into a store, perhaps designed for a two-foot-long bicycle, worthy of a belly laugh. The European airports provided considerably better

Lost my wheelchair charge on Day 1. OMG. Busted. Until angels stepped in. Grateful, grateful, grateful Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Watch the video here Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)   Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion 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) Sponsored by Abridge Inspired by and grateful to Linda and Mike DeRosa, Kate Higgins, Mary Lawler, Ann Boland, Ed Lomotan, Carole Blueweiss, David Bourne Links The video version of this episode Related podcasts https://health-hats.com/pod156/ https://health-hats.com/pod154/ https://health-hats.com/days-6-12-camino-de-santiago-rejuvenated-inspired-not-yet-peaked/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Okay, let me see if I could tell you a story while I’m going. So it’s the story of angels. And I started the first day on our trip. I realized that for whatever reason, I didn’t have my charger and I had a Plan A, Plan B and a Plan C. With a Plan A was that we find somebody in Porto that could sell a charger that was appropriate. Plan B was somebody who would rent me a chair that had a charger. And I just take the charger and Plan C I guess I had a plan D. Plan C was to take just to rent a chair, another chair, and then the plan was to have my son Simon get one from. The plan D was, he did get the charger from the company in Austin. When I got my truck, well plan, they didn’t work. Nobody had plan B didn’t work because. Like there’s nothing to rent because I would’ve had to bring the chair back to the Porto from Santiago de Compostella. Plan D was that the company ForceMech couldn’t ship it directly because they weren’t allowed. So I, we ended up calling like all these different companies. I didn’t, I actually, I called nobody, my wife, Linda few people call companies the hotel that we were staying at. Nothing. So I started arranging with my son to have the chargers sent to him in Boston, and then he would ship it next day delivery. If the charter cost of $200 to get it through the travel agent who would then get it for me. Meanwhile, we got a phone call. Linda got a phone call from one of the company, people that one of the companies that she had spoken with and they said, oh, we just been thinking about you and you just so wanted you to, you know, be able to, you can’t imagine how you could go without a charger and it would ruin your vacation. And they, and they said, so we called all our customers or a bunch of our customers, and we found somebody that had a charger you could use. And they went to that person, borrowed it and then they drove it to our hotel. And I’ve, that’s what I’ve been using. That’s an angel. And you know, my son, the ForceMech company, everybody did their part, but it never got out of with FedEx Brussels. So two weeks later, I’m going to get it. Just one more. I’m already way to go home. That’s my story.       &#160

Heading to Portugal. Ready. Listen to last episode from ’19 Spanish Camino. Sounds of tapping of my canes, white storks, cathedral bells chiming. Stay tuned. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, hard-of-hearing or deaf? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on transcript) Proem.. 1 Advantages of progressive illness 03:20. 1 Heading out shortly 04:45. 2 Week 2 06:01. 2 Inspired 07:14. 2 Quieting my mind 09:31. 3 Tap, tap, tap of my two canes 11:58. 3 Mobility package 15:45. 3 White storks in Portomarin 16:14. 4 Santiago de Compostela Cathedral 16:39. 4 Heading home to Boston 17:35. 4 Reflection 17:56. 4 Links Rien MacDonald’s Hope Initiative podcast Maria Xenidou’s Impact Learning podcast Regina Holliday’s Cinderblocks conference Marly Camino Guided Tours Related podcasts Camino de Santiago Episodes Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to David Bourne, Carole Blueweiss, Rien MacDonald, Maria Xenidou, Regina Holliday, Mary Lawler, Ann Boland, Mike and Linda DeRosa, Kate Higgins, Cynthia Meyer About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to the blog https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem I’m getting ready to go on a pilgrimage to Portugal and Spain. It’s the Camino de Santiago. And for those of you who’ve been following me, know I’ve been podcasting about it. I’ve been podcasting about my previous trip in 2019 when we went to Spain and my training. I’ve gotten a lot of comments on these episodes, and mostly they’re attaboy comments, but some asked me if I’m afraid. Aren’t I scared? I think that’s a good question. At first, I just wanted to dismiss it. What could happen? I’m going with friends, lots of other people are on this pilgrimage. It was safety uneventful in 2019 when we went. But to be honest with you, yes, I have some fear. I have a “what if” kind of thing. What if this, what if that, what if I have an exacerbation of my MS? What if I fall? What if I hurt myself? And I worry about that stuff? I do. I’ve been accused of being pathologically optimistic, and I am. I like to look on the bright side and plow ahead, looking forward to adventuring. But I do have my periods of fear. You can’t have a chronic progressive illness, like multiple sclerosis and always be pathologically optimistic. That would be insane. I will say that MS is seriously annoying. MS sucks. It really sucks. But I’m the kind of person with my demons at night, whether it’s waking up in the middle of the night, worrying about, oh my goodness, what’s this ache? What’s this pain? Is this the beginning of the end? Or have dreams? And I have dreams where I’m out of control, where all of a sudden, I’ll find myself somewhere, and I have no assistive device. I have no friends. I just feel like I’m in danger. So, my fears are nighttime fears for the most part. But it’s a good question. Advantages of progressive illness I do feel that I hav

Engaging patients differs depending on the role. Those on national Boards lead, strategize, advocate, communicate. Adam Thompson is on the Board of NQF. Listen in. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Adam Thompson 02:38. 1 Patient-caregiver advocates on national Boards of Directors 04:21. 2 Activist, Advocate, Conduit, Leader 06:15. 3 The Ryan White HIV/AIDS Program 09:42. 4 Pulling the curtain back. Feeling our oats. 13:52. 4 The right place to make a difference and re-charge 18:26. 5 Learn, coach, mentor 20:43. 6 Listen, reveal, shout 25:50. 7 Levers of power. Drunk the Kool-Aid. Now what? 30:56. 8 Transparency. The sausage gets made. 34:17. 9 More on conduits 39:39. 10 Engage, dissemination, act 41:02. 10 Is seeking public comment enough? 42:54. 11 Reflection 45:00 11 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Nikki Montgomery, Matthew Pickering, Jan Oldenburg, Danny Sands, Matt Hudson, Dana Gelb Safron, Nakela Cook, Christine Goertz, Kristin Carman, Luc Pelletier, Jan Oldenburg, Sharon Levine, Kara Ayers Links Adam Thompson, LinkedIn National Quality Forum (NQF) PCORI (Patient-Centered Outcomes Research Institute) Dr. David Nash Ryan White program Dolores Dockrey Dr. W Edwards Deming called it profound knowledge. Related podcasts https://health-hats.com/pod110/ https://health-hats.com/pod145/ https://health-hats.com/pod153/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem As a nurse, I studied individual health. Then I became a student of organizational health. That led me to management and leadership – all with the mind to get stuff done. Done for people, with people, by people -patients, caregivers, and direct care clinicians. My role changed at each step. My bag of tools grew. I learned to be a good leader, coach, and mentor. Sometimes great. Sometimes I reached my goal when I had one—my success measure: Bat .500 – Success half the time. Now I’m old, nearing the end of my career, and I’m on a national board, the Board of Governors of PCORI (Patient-Centered Outcomes Research Institute). As a life-long learner and master networker, I started looking for other people Identifying as patient-caregiver stakeholders on national boards. I found our guest, Adam Thompson, recently. He’s on the board of the National Quality Forum (NQF). I’m a member of NQF and serve on several committees and panels. Matt Pickering, a Director at NQF, appeared on Health Hats, the Podcast a few months ago. NQF’s Mission: To be the trusted voice driving measurable health improvements. Its Vision: Every person experiences high-value care and optimal health outcomes. There’s way more to it than that. Let’s meet Adam and learn more. Introducing Adam Thompson Health Hats: Good morning. How are you? Adam Thompson: So glad it’s Friday. This was finals week for graduate school, and the first half of our th

Not about walking miles & managing shoes. My training includes mobility and audiovisual prep. Bear with my experiment. Podcast, YouTube, & article. A bit rough. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Watch the video here Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Training Day 1: Cold 01:21. 1 Walking, pushing my chair 05:46. 2 Day 1 Training Debrief 06:37. 2 Crossing a busy street. 07:35. 2 Reflection 08:31. 2 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion 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) Sponsored by Abridge Inspired by and grateful to Linda and Mike DeRosa, Kate Higgins, Mary Lawler, Ann Boland, Ed Lomotan, Carole Blueweiss, David Bourne Links The video version of this episode Related podcasts https://health-hats.com/pod156/ https://health-hats.com/pod154/ https://health-hats.com/days-6-12-camino-de-santiago-rejuvenated-inspired-not-yet-peaked/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem In the background, you hear my wheelchair as I train for our 200-kilometer Portugal’s north coast to western Spain hike coming up soon. I feel 10-years-old and 70. Ten, because I’m jumping up and down in my head and want to sleep in the car till we go. Seventy because I am a two-legged, cisgender old white man of privilege who gets around with his Forcemech electric wheelchair and Ergobaum forearm crutches. My training is not about walking miles and managing my shoes but includes mobility and audiovisual prep. So, bear with me as I experiment with both. You’ll be hearing about my mobility training during the podcast and video and watching the results of my audio-video experimentation. It’s all a bit rough. And fun, fun, fun. I’ll take you through a couple of training days in varied weather and on different paths. I’ll post show notes with a transcript for you readers and a link to my YouTube channel for you watchers. Training Day 1: Cold Hey, there. I’m doing my training. Believe it or not, I’m doing my training to go on to the Portugal Camino. That’s a pilgrimage that we’ll go along the coast, on north up the coast from Porto, Portugal to Spain, which is an ancient pilgrimage. And I’m my training, unlike hikers, to see how many miles they can walk. For me, it’s more Since I’m a wheelchair and two cane fellow, I need to build up my endurance to be able to go. I’m hoping five to seven miles a day on an assessable part of the trail. And to do that, I need to get some more stamina and figure out how much sitting I can do, how much pushing my wheelchair what kind of stretches I need to do. And so today is about a month and a half before we go. And I’m going to. My goal today is to tool five miles on a bike path. I’m crossing a road, and they don’t stop even though they’re supposed to. And I’m going to go on a bike path, and what I know so far, it’s cold today. First, you could see me. I bundled up. When you ride in the chair, it’s a little less. When you w

Decision aids with Dr. Daniel Matlock. Complexity of decisions, agency of decision-makers, timing, the black box, answering questions as they arise. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 The fragility of life strengthens 01:50. 1 Early health decisions for the family 04:22. 2 Endless questions about decision aids. Who, why, what, how? 06:18. 3 Stakeholder participation developing decision aids 10:17. 4 Biased to what? 11:08. 4 As the stakes go up, enter the caregiver & family as stakeholder 11:35. 4 Changing level of agency. So many decisions, like putting in a kitchen 13:12. 5 Who are decision aids for? 15:07. 5 Shared decisions 16:21. 5 One-time decisions, ongoing communication 18:50. 6 Tracking decisions and their impact 19:51. 6 We decided what? How’d it gone? A black box 25:35. 7 Design decisions – in the clinic or outside 27:32. 8 Where do I go to get questions answered when I have them? 27:32. 8 Reflection 31:49 9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Joey van Leeuwen Quartet playing Mou’s Blues Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Geri Baumblatt, Jodyn Platt, Josh Richardson, Janice McCallum, Lacy Fabian, Michelle Lenox, Michael Mittleman Links All of our team’s decision aids are freely available at www.patientdecisionaid.org. Dan Matlock’s email Sharing Decisions About Systemic Therapy for Advanced Cancers Related podcasts Health Hats Series: Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care Health Hats Series: Choices About Your Health with Your Team About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Welcome to another installment in my series on medical decision-making. I doubt this series will ever end. How can it? Our experiments of one or societal experiments of medical action or inaction never cease. I met our guest, Dr. Daniel Matlock, at a conference recently. Dr. Matlock is the Director of the Colorado Program for Patient-Centered Decisions at ACCORDS (The Adult and Child Consortium for Outcomes Research and Delivery Science) and the interim Director of the Division of Geriatrics at the University of Colorado. He is board-certified in Internal Medicine, Geriatrics, and Palliative care. His research aims to fundamentally change and improve how patients decide about invasive cardiovascular technologies. The fragility of life strengthens Health Hats: Dan. Welcome. Thank you. It’s very nice of you to join us today. I wanted to just start with getting to know you. Can you think back about the first time you were aware that health was fragile? What was happening at that time in your life? Dan Matlock: That’s such a great question. You did warn me about this question ahead of time. So, I had some time to think about it, and I couldn’t come up with a specific event, but I have some thoughts on it. I grew up in the suburbs, pretty safe, white kid, not any

Why measure health outcomes? What information comes from outcome data? What action does the information motivate? How do disparities figure in? Why risk adjust? Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Knowing enough to be dangerous 02:21. 1 Why measure health outcomes? 04:28. 2 Information from measurement 05:20. 2 Action from information (plus money) 06:07. 2 How do disparities fit in? Look past your nose. 08:12. 2 Risk adjustment 10:29. 3 Reflection 11:44 3 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Joey van Leeuwen Quartet playing Black Narcissus by Joe Henderson Web and Social Media Coach Kayla Nelson @lifeoflesion Photo by Elise Wilcox on Unsplash The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Matthew Pickering, Cary Sanders, Rebekah Angove, Lina Walker, Adam Thompson, Ben Zola, Amanda Brush, Ellen Schultz, Laura Marcial, Juhan Sonin, Jennifer Bright, William Lawrence Links Risk Adjustment – Factors Affecting Adjustment CMS Physician Cost Measurement and Patient Relationship Codes Technical Expert Panel National Academy of Medicine DIgital Health Learning Collaborative, National Quality Forum’s Cost and Efficiency Standing Committee GoInvo Determinants of Health Related podcasts https://health-hats.com/pod145/ https://health-hats.com/pod140/ https://health-hats.com/pod133/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Can grasping risk adjustment contribute to a profound understanding of health inequities and motivate action to improve? Whaaattt are you talking about, you ask? As I write this episode, I’m preparing to join an NQF (National Quality Forum) Risk Adjustment Special Populations focus group. Understanding health disparities through measurement and experience and then acting on that information to improve equity ranks high on my list of advocacy priorities. I’m holding my nose, diving in, not at all sure I can swim. Granted, I don’t think NQF is asking this question. Rather they’re asking what we think about using a statistical process, risk adjustment, to compare the quality of hospitals and doctors more fairly. But like any good politician I don’t want to answer the question asked of me. Knowing enough to be dangerous Let me start by saying that I am not an expert in disparities, equity, or health outcome measurement. After all, I am a two-legged, cisgender, old white man of privilege with access to the best healthcare in the world. I know enough to be curious and ask questions. I have been immersed in health measurement for my whole career. I have served on technical expert panels about healthcare outcomes and measurement for CMS (Center for Medicare and Medicaid Services), the National Academy of Medicine, NQF (the National Quality Forum), and MassHealth. I sit at these tables as a patient-caregiver activist. I’ve taken courses in statistics. But wherever I am, when disparities and measuring health outcomes comes up, I feel like I know enough to be dangerous. For examp

Rare diseases as a health equity group. Rare doesn’t mean never. Commonalities & differences.Learning from tiny populations. Chat with Doug Lindsay. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 The fragility of health for Doug Lindsay 01:57. 1 Personal medical consultant finding answers 04:10. 2 Rare disease as an equity challenge 05:31. 2 Commonalities of people with rare diseases 09:46. 3 Helicopters, zebras, interns’ disease in physician training 11:13. 4 Undiagnosed disease programs 14:24. 4 Categories of differences across rare diseases 15:28. 5 Comparative effectiveness methodologies 17:31. 5 Using existing models in new fields. Learning from tiny populations 20:59. 6 Leave us with something 23:59. 7 Rare doesn’t mean never. Questions mean an opening 25:21. 7 Rare disease as a health equity group 27:04. 7 More than 25-30 million people have a rare disease 28:11. 8 Rare Disease Day 28:48. 8 NORD National Organization for Rare Diseases 30:45. 8 Reflection 33:07. 9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Lynne Becker, Morgan Gleason, Marnie Cartelli, Jill Johnson-Young, Adriana Mallozzi, Wesley Michael, Lauren Reimer-Etheridge, Sara Lorraine Snyder, Alexis Snyder, Jill Woodworth, CJ Rhodes, Rebecca Archer, Shiri Ben Arzi, Lisa Deck Links Doug Lindsay LinkedIn Opinion piece Rare Disease Day PCORI (Patient-Centered Outcomes Research Institute)’s Rare Disease Advisory Panel. Castleman’s disease, David Fajgenbaum, the physician at UPenn who found his own cure and wrote the book Chasing My Cure NORD National Organization of Rare Diseases Esquilax Related podcasts https://health-hats.com/rare_disease_research/ https://health-hats.com/lead-by-example/ https://health-hats.com/a-zebra-not-a-horse-rare-patient-voice/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem For twenty-five years, physicians diagnosed my periodic episodes of fainting, falling, disorientation as cardiac. Eventually, in my 50s, I learned I had multiple Sclerosis, not cardiac disease – repeated misdiagnosis. Multiple Sclerosis is not a rare disease. I come only this close to appreciating the trials and tribulations of experiencing an undiagnosed illness. Something is wrong, I know it, I feel it, why can’t you name it and treat it? February 28th is Rare Disease Day. Twenty to thirty million people have rare diseases and struggle to name their constellation of conditions and find treatment. I reached out to my colleague, Doug Lindsay, who I met through PCORI (Patient-Centered Outcomes Research Institute)’s Rare Disease Advisory Panel. Let’s jump right into our conversation. The fragility of health for Doug Lindsay Health Hats: Doug, thank you so much for joining us. I’m excited that you’re here. I don’t think I only met you not that long ago. And we were on a call together. I believe the PCORI Rare Disease Adv

Data is not info is not action. Data, cooked into Info could lead to action. People add context, values, culture, experiences, history, biases to data and info. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Bryn Rhodes and Laura Marcial 04:02. 2 Realizing the fragility of health 06:41. 2 We made which decision? How did it turn out? 09:52. 3 End point? Decision, action, continual learning? 13:26. 4 What data to collect? When to collect it? 14:32. 4 Who does this work for in real life? 15:48. 4 Context matters for blood pressure 18:14. 5 Ongoing learning post research 22:32. 6 Spanning the gulf between specialized expertise 23:52. 6 Data needs infrastructure to become information 26:15. 6 Summarizing for the Public 30:17. 7 Hubris. Satisfied with stopping at results. 33:45. 8 Reflection 39:21. 9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Lauren McCormack, Bill Lawrence, Lygeia Ricciardi, Cynthia Cullen, Juhan Sonin, Cheryl Damberg, Jack Needleman, Matthew Pickering, Aaron Carroll, Greg Merritt, Wesley Michael Links Health eDecisions Clinical Quality Framework Initiatives (CQF) FHIR® (Fast Healthcare Interoperability Resources). Healthcare Triage Podcast Triage Science Culture and Reproducibility Series An excellent series about the challenges of research industrial complex values and priorities. So much to learn here even for me, eyeball deep in research funding. Related podcasts Health Hats episodes about Clinical Decision Support https://health-hats.com/clinical-decision-support-technology-still-human/ https://health-hats.com/humanity-before-technology-clinical-decision-support/ https://health-hats.com/a-zebra-not-a-horse-rare-patient-voice/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Sometimes I feel absolutely disgusted with the hubris of academic research. How did we ever get to the place where we’re satisfied when we define high-value evidence from research that controls for most real-life factors (variables)? Supposedly good research controls for circumstances, settings, and populations until the research becomes so vanilla as to be meaningless to me and you. How can we expect people to use vanilla research to make decisions when it excludes people like them? Excludes women, people of color, the homeless, the incarcerated, those with rare diseases, and only includes able-bodied people or mostly people treated in academic medical centers? Research that barely knows how to use person-recorded data; can’t figure out how to track people’s decisions or the outcomes of those decisions over time; finds claims and medical records data to be the strongest data; can’t figure out how to correct medical record data errors. I get how complex this is, but where did we find so few resources to continually learn and get out of this rut? It’s just not good enough. I’m tired of the excuses: we don’t have

Healthcare decisions affect you and others. Complicated for everyone. Knowledge waiting to be implemented. Join this chat with Dr. Talya Miron-Shatz. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Dr. Talya Miron-Shatz 00:50. 1 Genetic counseling and medical decision-making 04:27. 2 Personal goals, exploration, universal truths, and decision-making 06:52. 2 Consequences, risks, benefits, and alternatives 11:22. 3 Decisions with family caregivers 16:21. 4 Cost of decisions 20:37. 5 COVID, vacation, depression 28:48. 7 Tracking decisions and outcomes over time 29:52. 7 Action, implementation, rather than a new study 35:54. 9 Top three takeaways 39:03. 9 Reflection 41:22 10 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Sponsored by Abridge Inspired by and grateful to Adrian Gropper, Janice McCallum, Michelle Lenox, Amy Price, Ginny Meadows, Lauren McCormack, Glyn Elwyn, Gregory Makoul, Z Colette Edwards Links Linkedin: https://www.linkedin.com/in/talya-miron-shatz/ Twitter: @TalyaMironShatz Website Buy Your Life Depends On It Deliberation before determination: the definition and evaluation of good decision making https://pubmed.ncbi.nlm.nih.gov/22618581/. Shared Decision Making: A Model for Clinical Practice Nobel Prize Winner Richard Thaler Z Colette Edwards Related podcasts Health Hats episodes about Clinical Decision Support About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem The COVID pandemic highlights the impact of our choices about health and habits on ourselves and each other as well as the impact of others’ choices on us. Think crowding, masking, vaccinations, collaborative problem-solving. Our lives depend on the choices we and others make. Sometimes our choices have little impact; rather, policy, employers, community culture, work and home settings, travel have a more significant effect and seem remote from our personal choices. Clearly, it’s complicated. Introducing Dr. Talya Miron-Shatz My guest, Dr. Talya Miron-Shatz, a key note speaker, consultant, and researcher at the intersection of medicine and behavioral economics wrote a book, Your Life Depends on It: What You Can Do to Make Better Choices About Your Health that was just published. She is a visiting researcher at the University of Cambridge. Dr. Miron-Shatz was Nobel Prize winner Daniel Kahneman’s post-doc at Princeton University, and a lecturer at Wharton, the University of Pennsylvania. She is CEO of CureMyWay, an international health consulting firm whose clients include Johnson & Johnson, Pfizer, and Samsung. Health Hats: Thanks for joining me. It’s lovely to see you. And I appreciate that you’re on the other side of the world. I think it’s amazing that I saw you not that long ago. Talya Miron Shatz: Yeah. It was fun. It was such a fun time being at the health conference, and it’s almost like we got so used to zoom, and you think you don’t need to see

I found myself on a pilgrimage of sounds. Disabled. Left out. Mobile. Podcasting in Spain from my wheelchair in 2019. Portugal Camino next. Anything different? Buen Camino Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, hard-of-hearing or deaf? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on transcript) Proem.. 1 Eureka! It’s a Pilgrimage 02:21. 1 Sound sampler 03:08. 2 Missed sounds. Still a story. 04:33. 2 Travelogue 06:26. 2 Day 1 to 2 Madrid to Villafranca del Bierzo 06:44. 2 Day 2 to 4 Villafranca del Bierzo to Trabadelo to Herreras 08:41. 3 Handicapped. Mobility or language? 11:06. 3 Day 5-6 Herrerias and O’Cebreiro 12:55. 4 Left out 14:28. 4 Pilgrimage – handicaps, feeling left out 16:33. 4 Rooster crows 07:15. 5 Reflection 17:25 5 Links Camino de Santiago Camino de Santiago Forum Marly Camino Guided Tours Notes Grateful to and inspired by Linda DeRosa, Mary Lawler, Ann Boland, Mike DeRosa, Kate Higgins, Cynthia Meyer, Ed Lomotan Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Photo by Linda DeRosa About the Show Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel. Let’s make some sense of all this. To subscribe go to the blog https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem As I gear up for another international adventure, I feel my aging, disabled, optimistic, fearful white man of privilege self. Our insanely successful 2019 trip to the Spanish Camino opened my eyes even more to the possibilities of travel with disabilities. Our success as a travel team rested on our flexibility, compassion, and gratitude plus planning. Working with the Carly Camino Travel Agency we booked just barely accessible accommodations, drivers with translation apps so we could communicate, and GPS WhatsApp so drivers could find me when I got lost (twice). ‘We see you, stay where you are, we’ll find you.’ My cronies and I have all struggled through ailments, surgeries, infections, and pain over the past three years, so realism tempers our optimism. This time we’re pooling resources for a support van available whenever we’re not in lodging. A theme of this reprised episode was feeling left out. Gratefully, feeling left out hasn’t lasted or resurfaced. Eureka! It’s a Pilgrimage I find myself on a pilgrimage. I thought I was tagging along with my wife’s hiking group through rural, Northern Spain as a disabled person. But one of our companions, Mary, has been talking about the pilgrimage that the Camino de Santiago has been for centuries and is for her. I didn’t take that in at first. Since I can’t hike, I thought I’d focus on recording and podcasting the experience. I was especially drawn to environmental sounds in my preparation for the adventure. My ears have become more sensitive as I walk or motor around my hometown, Boston. More chirps, more barks, more chatter, more wind. Sound sampler David Bourne, from North Carolina, has been educating me on recording sounds around me. Headphones and a shotgun mic amplify those sounds. Woah! Listen to the range of sounds I’ve recorded. If you’re reading, now’s the time to listen. Urban sounds from a balcony outside the town square in Villafranca del Bierzo Rural sounds of a field with cows and their cowbells along a creek in Herrerias The sounds of my wheelchair as I drive on a paved street in Trabadelo. You can hear the whir of the chairs electric motor The sounds of my wheelchair driving on cobblestones in Sarria Missed sounds. Still a story. I’ve missed many sounds I wanted to record. I heard a rooster crowing. Took me 10 minutes to open the equipment bag, go outside, set up the equipment and start to record. I thought, “At least a rooster keeps crowin

The odyssey of sustained community engagement at Cambridge Health Alliance with Janice John and Jamila Xible. Cross-pollination of expertise and employment. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Jamila Xible and Janice John 01:28. 2 Communities served by CHA 04:57. 2 Most healthcare occurs upstream from hospitals and clinics 06:47. 3 Serving communities of immigrants 08:05. 3 Investing in community health workers 10:16. 4 Behavioral health community workers 13:09. 5 Hiring from within communities 15:31. 5 Overload of information accessing care 17:18. 6 Volunteer Health Advisors 21:03. 6 Nuances of culture 23:01. 7 Closing the gap for equitable care – a bit 25:04. 8 Outreach versus engagement 27:55. 8 Cultural humility 29:14. 8 Physician Assistant, Physician Associate 30:23. 9 Barometer for inclusion and engagement 32:59. 9 The complexities of community engagement 35:32. 10 Reflection 38:02 10 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Inspiration from Ellen Schultz, Kirsten Meisinger, Michele Whitt, Lisa Masinter, James Harrison, Russell Bennett, Ben Hamlin, Regina Greer-Smith, Tania Dutta, Uma Kotagal, Neely Williams Sponsored by Abridge Links Cambridge Health Alliance CHA Facebook Page CHA Healthy Now Blog Link to cultural humility video https://www.youtube.com/watch?v=_Mbu8bvKb_U https://lownhospitalsindex.org/hospital/cambridge-health-alliance/ https://www.challiance.org/community-health/volunteer-health-advisor-program https://www.bhchp.org/. Boston Healthcare for the Homeless Related podcasts and blogs Community engagement episodes on Health Hats, the Podcast https://health-hats.com/pod150/ https://health-hats.com/minister-to-community-spirit/ https://health-hats.com/pod133/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Welcome to the eleventh episode in Health Hats’ community engagement series. I’m fascinated with communities that gather to solve a problem, their problem. I tune my ears to such communities and grab guests to join us and share. Less often, I discover institutions actively and sustainably (over years or decades) engaged with the communities they serve. What’s the difference – one time and sustained? One time is meaningful, significant, fulfilling, amazing. And hard to learn from and time-consuming to start. No rapid zero to 60 mph when you need it. Sustained engagement takes time to build an investment upfront and ongoing, but it’s available on demand. They’re different, with different results. One such institution sustaining community engagement is the Cambridge Health Alliance (CHA). Several episodes ago, we met Dr. Kirstin Meisinger, who recommended inviting Janice John and Jamila Xible to be our guests. Introducing Jamila Xible and Janice John Health Hats: Jamila Xible, Director of Health Education and Access Programs at the Cambridge Health Alliance, is responsible for the oversight of several programs, including the Volunteer Health Advisors, Aging Wisely Everett, Senior Suicide Prevention, Women’s Health Network, and the Community He

Revisit 2019 travel to Spain with disabilities. A guest in other people’s lives. Differentiating between sound and noise. Heightening senses, expanding voice. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Taking stock 02:41. 1 A guest in other people’s lives 03:20. 1 Glad I’m not him 03:59. 2 Mobility enhancers rule! 05:25. 2 Gazing past our navels 08:04. 3 Differentiating sound and noise 10:02. 3 Reflection 11:17. 3 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Web/social media coach, Kayla Nelson Inspired by and grateful to Ann Boland, Linda and Mike DeRosa, Mary Lawler, Kate Higgins Sponsored by Abridge Links https://en.wikipedia.org/wiki/Camino_de_Santiago Maria Xenidou LinkedIn Impact Learning podcast Ame Sanders LinkedIn State of Inclusion website State of Inclusion Podcast The Podcasting Fellowship Related podcasts and blogs https://health-hats.com/camino-de-santiago-pilgrimage-of-sounds/ https://health-hats.com/days-6-12-camino-de-santiago-rejuvenated-inspired-not-yet-peaked/   About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem In May 2019 my wife, a couple of friends, and I went to Spain to hike the Camino de Santiago pilgrimage. Full disclosure, they hiked I road in taxis, in my electric wheelchair, and with canes. Now the same crew and two others are planning a trip in April 2022 to hike the Portugal Camino, God willing, and the creek don’t rise. I thought I’d reprise the three episodes associated with the Spain adventure over the next couple of months to get myself back in the groove. Although the six of us have known each other for more than 55 years, have traveled together in various assortments and conditions including hitchhiking, foreign and domestic, we are all close to or over 70 with various aches, pains, and disabilities. Two years after the Spain Camino I am less mobile and less cocky, but all still rarin’ to go. Plus, if not now, when? This episode, #19, was first aired May 3rd, 2019, six months into my now three-year podcasting journey. No sponsor yet. Less music. Again, still risk-taking and curious. Let’s drop in on this flash from the past. Taking stock Hey there, glad you could join me. I’d like to pause and take stock of the past six months and look a bit to the future. We’re in the middle of a series with Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care. I’ve published 7 episodes in this series. I’m taking a brief break on the series and traveling to Spain. While we’re here together I’ll look back at the series, talk about Spain, and reflect on my patient/caregiver activism journey. A guest in other people’s lives First, I cherish the opportunity to be part of intimate moments in people’s lives. In my career as a practicing nurse, I thought I had license to be nosey. I was a guest in other people’s lives. People are often amazing. They face complicated and frustrating challenges, jump hurdles, find help, and relieve boredom with humor. This inspires me. It fuels my fire. It gives me perspective. I’ve got it good. No, I’ve got it great. I’ll tell you a quick story here. Glad I’m not him When I was an aide at the Detroit Rehabilitation Institute, I was working the evening shift with a man in his 30’s who had had a gunshot injury to the neck. He was quadriplegic (no

Coaching, critical to my success in life, art, politics, advocacy. Still need to do my own work & make choices. Listen to a session with one of my coaches, Jan Oldenburg. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 The start of a business relationship 03:19. 2 Managing the swirl of me 05:50. 2 Coaching as a parent of a teen 07:21. 3 Advice, reflection, self-reflection, shades of grey 09:56. 3 First, build trust 11:02. 3 New position, new relationships, new levers 12:51. 4 Measurable outcomes of a strategic plan 16:24. 4 Changing roles at PCORI 17:02. 5 Vanilla management training. No nuts 20:08. 5 Clarifying personal mission, priorities, goals 24:26. 6 Staying in touch with, leveraging, advancing my constituency 26:27. 6 Capable of a delicate balance? 29:22. 7 Rare Disease as an inequity 30:15. 7 Keeping a pulse on Board effectiveness 32:23. 7 Leadership role on the Board 34:00. 8 The rest of my life 39:11. 9 Reflection 45:42. 10 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Rumours of Light image used by permission from Sue Heatherington @theWaterside Quiet Disruptors Inspired by and grateful to: Christine Goertz, Sharon Levine, Nakela Cook, Mike Herndon, Tanisha Carino, Kara Ayers, Connie Hwang, Luc Pelletier, Caryl Carpenter, Dorothy Cucinelli, Peter Tetrault, Tim Sullivan, Cynthia Meyer Sponsored by Abridge Links Related podcasts and blogs https://health-hats.com/pod141/ https://health-hats.com/chiropractic-operating-at-peak-performance/ https://health-hats.com/retirement-micro-stepping-with-mini-goals/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Want to be a fly on the wall of a year-end session with my professional coach, Jan Oldenburg? You can hear the good, the bad, and the ugly of my process to hone and strategize my professional and personal work. Why would I share a coaching session? Is this TMI (Too much information) too private? Does it make me vulnerable? In last week’s podcast, Matthew Hudson emphasized that you reveal something about yourself with the questions you ask, the problems you try to solve. Frankly, I am a bit anxious about sharing this, but you already know that I have little guile. I wear my life on my sleeve. I try not to say stuff I wouldn’t want on a billboard, but I’m not perfect at that. I reveal this session so you might sense how important coaching can be anytime in your life. Early in a career, as a leader, in health, art. I’ve been fortunate to have many coaches over the years, some paid, some pro-bono. Here are a few: Lynn Hubbard, Caryl Carpenter, Luc Pelletier, Dorothy Cuccinelli, Tim Sullivan, Peter Tetrault, and my current coaches, Jan Oldenburg, Jeff Harrington, and Kayla Nelson. As you’ll hear in the conversation with Jan, the output of coaching is up to me. I need to do the work. The choices are mine. This session is audio and video recorded with a transcript. You can find the video of this episode on YouTube with links on my website show notes. By the way, I thought this would be the least edited episode I’ve ever prod

Embedded researcher, Matt Hudson. Partnerships, self-reflection, values, equity. Treat illness in service of community prosperity. An instruction manual. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Matthew Hudson 00:41. 1 Introducing an embedded researcher 02:58. 2 Skillset of an embedded researcher – like a musician 05:31. 2 Embedded researchers in the community 06:57. 3 Employing, partnering with a researcher 09:10. 3 Permission versus commitment to act on research 13:26. 4 Implementation science. Just do it. 14:56. 5 Embedded researcher as steward 17:20. 5 Research in the context of care delivery. Individual health, organizational health. 18:18. 5 Workforce context 20:16. 6 Continually learning what works 24:40. 7 Music, again 31:05. 8 Do we see the questions through the same lenses? Buffing out the scratches 32:29. 8 Reveal something about yourself, not easy 36:39. 9 Self-reflection, values, and health equity 38:36. 10 Partnership: engage with blind spots and strengths 42:40. 10 Reflection 45:05 11 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Rumours of Light image used by permission from Sue Heatherington @theWaterside Quiet Disruptors Inspiration from and gratitude for Geri Baumblatt, Russell Bennett, Meghan Berman, Jennifer Canvasser, Kristin Carman, Tracy Carney, Gwen Darian, Karen Fortuna, Crispin Goytia-Vasquez, Alma McCormack, Alan Richmond, Brendaly Rodriquez, Beverly Rogers, Thomas Scheid, Lisa Stewart, Freddie White-Johnson, Neely Williams Sponsored by Abridge Links Learning Health Systems by Matthew Hudson, General orders for the embedded researcher: Moorings for a developing profession. Patient-Centered Outcomes Research Institute Advisory Panel on Patient Engagement PCORI Patient Engagement Toolkit Related podcasts and blogs https://health-hats.com/pod150/ https://health-hats.com/pod148/ https://health-hats.com/pod137/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem These days, several interests swirl through my mind and heart: disparities and equity in healthcare, community-research partnerships, and continuous learning about health. Swirling sounds too pretty and neat. Perhaps it’s smearing through my mind and heart – murky and messy. Introducing Matthew Hudson Recently, I read a commentary in the journal, Learning Health Systems by my friend and colleague, Matthew Hudson, entitled, “General orders for the embedded researcher: Moorings for a developing profession.” When I reconnected with Matt to congratulate him on his article and further explore the possibilities of embedded researcher, I realized that he thinks deeply about the whole smeared mess. I invited Matt to join us. Matthew F. Hudson, Ph.D. M.P.H. has over twenty years of experience conducting and teaching research in health care and academic settings. He has served on multiple private and federal research review committees prioritizing patient-centered outcomes research and health care organization science. Matthew also partners with other stakeholders to develop hospital-based

Turn-around. Interview of Health Hats by Craig Constantine entitled, Rich, about my podcasting process. A ton of work to keep it fresh. Ruthless editing. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Jumping into podcasting with both feet 1 Following my nose 04:35. 2 Ton of work, keeping it fresh and manageable 06:06. 2 Ruthless editing 07:55. 3 Process of telling a story 10:08. 3 Grateful for the podcasting communities 13:56. 4 Honoring different brains 15:48. 4 Reflection 18:49. 5 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Web/social media coach, Kayla Nelson Inspired by and grateful to Steve Heatherington, Ame Sanders, Tania Marien, Fred Guitierrez, Jane Beddall, Curtis Cates, Amanda Blodgett, Carole Blueweiss, Katherine Cocks, Karena DeSouza, Heidi Frei, Suzanne Jones, Catherine Lynch, Alice Merry, Matt Neil, Dawn Powell Sponsored by Abridge Support Health Hats, the Podcast financially Related podcasts and blogs https://health-hats.com/pod132/ https://health-hats.com/make-a-ruckus-podcasting/ https://health-hats.com/pod143/ Links Podcasting Community Pod Buffet About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem From time-to-time readers and listeners ask me about my process for podcasting. Recently, Craig Constantine, a crony in podcasting, interviewed me about my podcasting journey. Craig’s process is to record a 20-minute chat and publish it immediately without editing. For listeners, find a link to Craig’s episode in the show notes. For readers, go here. Why do I republish an already published episode? I learn from different styles of production. Remember that I co-published a couple of episodes in the past few months with Mighty Casey Quinlan’s Healthcare is Hilarious. I’ll let you know my observations in the Reflections at the end. Jumping into podcasting with both feet Craig Constantine: Hello. I’m Craig Constantine. Health Hats: Hi Craig, I’m Danny van Leeuwen. I’m also known as Health Hats, and I’m known as Health Hats because I am a person with multiple sclerosis. I’ve been a care partner to several family members’ end-of-life journeys. I’m a nurse, and I have led several Electronic Health Record implementations, and I’ve been in the C-suite of healthcare. So, I wear a lot of hats. Craig Constantine: Figuratively for sure and literally. Before we pressed record, we got into the topic of how you see podcasting as being a very rich experience for you. All the things that you get from it. And then we started talking about audio, and you mentioned how podcasting as an audio medium blends several different things that you’re already passionate about. And I think it’s super important to know, like you, you’ve also done a significant amount of blogging, and we also talked about how that’s very unidirectional. I totally agree. I blog a lot, and it’s very one way. And I get on my soapbox way too often. Craig does not need a megaphone. Do you recall what your experience was? So, you have a musical background. You’re also a musician. And when you started podcasting and the first time you brought somebody else in and realized the power of having that second person engage in a conversation. Do you remember what that was like? And what sort of ideas came to mind from that opening? Health Hats: My first ep

Dr. Kirsten Meisinger from the Cambridge Health Alliance engages long-standing community partners in telehealth usability with joy and grace. Deep. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Kirsten Meisinger 03:14. 2 Provider engagement, loving what you do 08:37. 3 Patient, provider, community engagement intertwined 10:51. 3 Telehealth, up in 60 seconds 12:12. 4 Long-standing patient experience partners 14:55. 4 When the world blows up 17:53. 5 Public health superpower 18:51. 5 Recognizing when it doesn’t work 22:42. 6 Leadership at many levels 25:12. 7 Equity. Giving people what they need. 27:41. 8 Key points 29:41. 8 Reflection 32:27 9   Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Inspiration from Mary Ellen Cortizas, Neely Williams, Freddie White-Johnson, Joanna Siegel, Karen Martin, Kristin Carman, Libby Hoy, Dick Argys, Tania Dutta, Russell Bennett, Bonnie Engelbart Sponsored by Abridge Links Cambridge Health Alliance CHA Facebook Page CHA Healthy Now Blog Katie’s Nutrition blog Transforming Clinical Practices Initiative National Collaborative for Health Equity (sponsored by NCQA) Related podcasts and blogs https://health-hats.com/pod122/ https://health-hats.com/minister-to-community-spirit/ https://health-hats.com/pod133/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Lately, the industry chatter about patient engagement has increased. Clients ask me to advise about patient engagement. What is patient engagement? How can we increase patient engagement? Is patient engagement worth it? Where do we find people to engage? What’s the business case for engagement? As time passes, my thoughts and advice change, and, frankly, I find myself at a loss to advise, even though I say patient engagement is my passion. Engagement from whose point of view, to what purpose? A person engaged in their health – Isn’t everyone engaged in their health? My symptoms affect me. I’m in pain. I can’t function as I’d like to. I’m sad. I’m anxious. I react. I manage, or I don’t. I can accept, deny, adapt. I suffer, I advocate, I overcome. Maybe it’s my parent’s health or my partner’s or my child’s. It’s all engagement. I’m engaged in my health. A clinician engages in their patients’ health. My neurologist said he’s an expert in what works related to treatments and therapeutics for populations of people with Multiple Sclerosis, but he doesn’t know crap about me and my life. He wants to learn about what’s important to me and about my basic habits and circumstances – transportation, finances, culture, and spiritual values, family, hobbies, exercise, diet…. He’s engaged in my health. A patient can engage by adhering to their clinicians’ prescriptions and medical plans? Indeed, a paternalistic and common view of engagement. I’m engaged when I follow all instructions, whether I understand them, can afford them, or can get to them. Patients engaged in governance, design, operations, and learning about medical care delivery, policy, research, technology, and business. People at the

My son. Mike, died 19 years ago, age 26. Wasn’t born with a tattoo telling him how long he had to live. Blood, married, intentional families. Love & boundaries. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 2021. 1 Open Hearts 2018 03:27. 1 Love myself 2002 04:43. 2 He met a girl 2018 09:50. 3 Birthday wishes for the old guy 2002 11:44. 3 Spiritual health 2018 12:40. 4 Lifetime warranty 2018 17:19. 4 Not personalizing death 2018 19:32. 5 Leave me a sign 2018 27:53. 6 Reflection 2020 30:00 7 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Robert Doherty, Simon and Ruben van Leeuwen, Ann Boland, Anica Madeo, Andrea Condit, India Duncan, Lenore Nowicky Links Related podcasts and blogs https://health-hats.com/superpower-accepting-what-is-1-99/ https://health-hats.com/best-spiritual-health-dying/ https://health-hats.com/pod138/   About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem 2021 I wasn’t born with a tattoo on my ass telling me how long I have to live. Welcome to the third anniversary of Health Hats, the Podcast, episode number 149. On November 15th, 2018, the first episode honored my son, Mike Funk, who died on November 18th, 2002, nineteen years ago, age 26, of metastatic melanoma. Mike, a wise poet, found his best spiritual health in that last year of his life. Hence, the most memorable sentence in my life. I wasn’t born with a tattoo on my ass telling me how long I have to live. I’m grateful to have known Mike, my son, our brother, our friend. I resurrect this episode to celebrate Mike and celebrate family – blood family, married family, intentional family. Mike was part of our intentional family. He was our son from other parents. Mike and I mused often about family especially in his final year. As you can imagine his intense feelings about his blood family and his intentional family colored those conversations. Ever the poet, we talked about the challenge of family as unconditional love, especially when you’ve been treated badly, neglected, abused, and left. We spoke about boundaries, unconditional love with boundaries, standing up for yourself, protecting yourself, setting limits. On this anniversary of dying, podcasting, life, I’m celebrating my families, my supporters, listeners, readers, and compatriots. I miss Mike, my mom, Ruth, my Uncle Leon, my sister-in-law, Peggy, my friend Bob Doherty. The partial list grows longer as I continue to experience life. Yet, life is good. Gratefully, here you go, episode one, ninety-nine, and 149. Happy Thanksgiving. Open Hearts 2018 Health Hats: In this session, I’ll share some tape of an interview with Mike a few months before he died. Bob Doherty conducted that interview and some thoughts and stories from me. One day, Mike and I were sitting at the kitchen table, talking about dying and superpowers. And Mike thought that he and I had the same superpower. We both accept what is. Not the ‘life sucks, what’re you gonna do’ variety of acceptance, but the ‘yup, here is impending death, how can we live our best lives’ variety. ‘Yup, he died young. Young death happens a lot. You open your heart, and tragedy walks right in. What’s the alternative, closed heart? Not for me. So, let me set the stage for

These three stories, my doctor and me, equity in health systems, care of children with severe heart problems, all contain a problem desperately needing fixing, choices – some based as research, others not – some action taken or no action. How can we continually learn from experience, share that cumulative experience to inform future choice-making and action? Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Underwhelming response to brilliance 03:41. 1 Pitches, no home runs 05:26. 2 Invoke curiosity without commitment 8:47. 2 Reflection 11:00. 3 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Inspired by and grateful to Amy Price, Duane Reynolds, Matthew Hudson, Laura Marcial, Melissa Reynolds Sponsored by Abridge Support Health Hats, the Podcast financially Links A framework for value-creating learning health systems AHRQ About Learning Health Systems Pregnancy and Fibromyalgia by Melissa Reynolds   Related podcasts and blogs https://health-hats.com/accessible-yoga-honor-your-body/ https://health-hats.com/everyone-included-research/ https://health-hats.com/hardwiring-continual-learning/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem When first diagnosed with Multiple Sclerosis, my neurologist told me he was expert in treating groups of people (populations) with MS, but he didn’t know crap about me. His job was to learn about me, and my job was to learn about MS. I shared what was important to me in my life, and he taught me about MS and treatments. We slowly learned what worked for me in care and treatment and what didn’t and re-examine year after year. In last week’s podcast episode, we chatted with Duane Reynolds from the Just Health Collaborative. He guides health systems in creating cultures of belonging, enabling a fair and just opportunity for everyone to achieve optimal health. I wonder what worked and what didn’t among the interventions his clients tried? When I worked at Boston Children’s Hospital, I was fascinated by their Cardiology Department’s Standardized Clinical Assessment And Management Plans (SCAMPs) to promote, not require, care standardization. SCAMPs “offered a clinician-designed approach to promoting care standardization that accommodates patients’ individual differences, respects providers’ clinical acumen, and keeps pace with the rapid growth of medical knowledge.” In lay terms, that was similar to my neurologist. People are different. Understand them, their preferences, stay up to date with research, make a treatment/care choice, and document what worked and what didn’t. Re-examine. Continually learn. These three stories, my doctor and me, equity in health systems, care of children with severe heart problems, all contain a problem desperately needing fixing, choices – some based as research, others not – some action taken or no action. How can we continually learn from experience, share that cumulative experience to inform future choice-making and action? Underwhelming response to brilliance I have introduced this idea of co

Duane Reynolds of the Just Health Collective reflects on a layered approach to combating racism. Individuals drive organizations that live within systems. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Duane Reynolds and the Just Health Collective 03:13. 2 Research into key drivers of health inequity 07:08. 3 How do root causes and interventions align? 09:53. 3 Organizations and communities operate on different time frames 12:55. 4 Individuals drive organizations that live within systems 16:06. 4 Eureka! Belonging. 18:45. 5 Reading the room 20:53. 5 Transformative change for employees 23:46. 6 Difficult conversations at home – the learning journey 26:41. 7 My education and support systems 30:45. 8 Reflection 33:34. 8   Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Inspiration from Fatima Muhammed Ighile, Neely Williams, Lisa Stewart, Ame Sanders, Matthew Hudson, Robert Doherty, Jason van Leeuwen, Benjamin Anderson, Nikki Montgomery, Michelle Whitt, Lisa Masinter, Janice Tufte Sponsored by Abridge Links Here is a direct link to the Just Health Collaborative website the Institute for Diversity and Health the Institute for Diversity and Health of the American Hospital Association Centering Health Equity podcast: https://centering-health-equity.squarespace.com/ Medium: https://medium.com/just-health-collective Just Health Collective Village Benjamin Anderson Rural Health Equity for the Colorado Hospital Association Invisible Woman, a plastic model of the human body with a removable pregnant abdomen Related podcasts and blogs Here are some of many episodes including health equity https://health-hats.com/pod110/ https://health-hats.com/pod133/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show Proem In 1960 I discovered that I didn’t belong. I was eight. My parents supported Kennedy for President. Everyone else’s parents supported Nixon. My eyes opened. My family was different. My parents were active in the Fair Housing Movement. They hosted businesspeople of color from Africa. No one else knew anyone of color who wasn’t a maid or landscaper. Boys carried sweaty, folded-up pictures of scantily dressed girls they got from their older brothers and giggled about them in the restroom. My mom had introduced my sister and me to the Invisible Woman, a plastic model of the human body with a removable pregnant abdomen. I didn’t get the attraction to those nudie pictures. I remember our Unitarian minister, Russell Bletzer, talking to us kids about belonging. That strange, lonely feeling had a name. My parents were holocaust survivors. They never mentioned belonging. Not until high school did I meet a crew where I felt I belonged—what a relief. I didn’t realize I was a white person of privilege until I was in nursing school. More about that later in the episode. The recognition of my privilege led to my embarrassment of that privilege. I hid it for forty years by saying I grew up in Chicago and Detroit rather than the tony suburbs of Highland Park and Grosse Pointe. Now, diversity, inclusi

I’m not the sharpest knife in the musician drawer. Disheartening. I wish I were better. If wishes made me play better… All I can do? Keep at it. In the last two years. I’ve gone from “I can’t do this, I’m quitting” to “I need to be better.” One foot in front of the other. If this were health, I’d advise that you never get better in a straight line- always many dips and rises. No dip, no rise. I do like the rise. Gotta live with the dips. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) I’m as good as I am 00:28. 1 Hiding, confidence, woodshedding 02:27. 1 Gigging, a dose of reality 04:42. 2 Peaks and valleys 05:52. 2 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Music, Midnight Mambo composed by Oscar Hernandez, played by Lechuga Fresca, Latin Band Inspired by and grateful to Joey van Leeuwen, Oscar van Leeuwen, Leon van Leeuwen, Kayla Nelson, Jeff Harrington, Jennifer Keeney, Cynthia Meyer Sponsored by Abridge Support Health Hats, the Podcast financially Links Related podcasts and blogs https://health-hats.com/listen-to-the-music/ https://health-hats.com/pod120/ https://health-hats.com/pod109/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines. The Show After last week’s arcane episode (Arcane means understood only by a few) about Cost in Healthcare, here’s something lighter and more familiar – plying a craft as a dedicated amateur, in my case, as a musician. I’m as good as I am I left for the gig determined and fearful. I’ve spent six to ten hours a week playing my horn since I got the new baritone sax stand. I hadn’t played for eight weeks with my back pain and inability to carry the weight of the fifteen-pound horn on my shoulders and neck. The new stand holds the sax independently so I can play sitting or standing. Working with my long-time teacher, Jeff, I’ve made considerable progress on feeling the form of the tunes, keeping my place with decent phrasing for my solos. I’ve made it a point to solo on three tunes each session the band plays, a stretch for me. Our alto player couldn’t make the gig; I would be one of two horn players. I was determined to solo on six tunes to fill the gap, I felt the fear about my ability or lack thereof. I’d be as good as I am – sweaty hubris, to be sure. Hiding, confidence, woodshedding My usual practice at gigs and rehearsals is to hide behind the other horn players for the melodies and choruses, reflecting my lack of confidence. I play softly; I stop when they stop. I don’t always understand the form – the arrangement. It changes frequently with our democratic style of arranging. I briefly led an effort to create a spreadsheet to keep track of the decisions about how the tunes begin, solo order, what happens between solos, how we end. Some reluctance among my bandmates to do that and some eagerness. I advocated with “At least we’ll have something to change.” But we didn’t keep it up, and I didn’t study it and keep it up for myself. A couple of tunes had a small bari sax part critical to the song. I worked on those for hours (woodshedding) to come in at the right place, w