Health Hats, the Podcast

By Danny van Leeuwen, Health Hats

Learning with people on the journey toward best health.... more

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March 13, 2022 Risk Adjustment, Equity, Movement. Jumping in the Deep End
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 example, I sit on the National Quality Forum's Cost and Efficiency Standing Committee. When I ask how disparities are considered in cost measurement, I’m pointed to risk adjustment. Now I'm skeptical because I don't understand risk adjustment. I do have common sense and the experience of my many Health Hats. But still, every question I ask sprouts ten more questions and leaves me covered with the pollen of bewilderment, confusion, and, yes, skepticism.
Let's start with common sense and see if we can't get to risk adjustment. Why measure health outcomes? What information does the outcome data give us? What action does the information motivate? How do disparities figure in? Why risk adjust? OK, here's what I think I know.
Why measure health outcomes?
Individually, we measure to keep track of something and motivate ourselves to action. Getting better, not getting better, holding our gains. Something is working; something isn't. Think weight, blood pressure, mood. We might measure to compare ourselves to someone else. Curiosity - I'm higher or lower. Why? A community (neighborhood, town, state, country) might also measure to track, motivate, and compare. Healthcare providers - clinicians, hospitals, clinics - might compare themselves to others, as might public and private payers to track and motivate change.
Information from measurement
The most common information gleaned from measuring outcomes is comparison. Comparing ourselves from yesterday, last week, last year. And of course, comparing to others - individuals, communities, businesses, providers. Comparison to others isn't straightforward. Are we comparing apples to apples? Comparing a health outcome for a two-year-old and a 90-year-old are different. Again, think weight, blood pressure, activity, diet, income, history of smoking. Babies and the elderly are not apples to apples.
Action from information (plus money)
Measurement for measurement’s sake is a waste of time and resources. Without an explicit reason to measure and the will and a plan for what to do with the results, I almost always advise against it. Why? When there's no will to act or explicit reason to measure, but it's required by someone else, things get messy fast. When required by parents, teachers, regulators, bosses curiosity fades. Motivation evaporates. Getting by, getting approval, winning become more important than taking action to improve.
Add money into the mix, and the complexity grows. People and groups get sensitive fast if the amount paid or received depends on health outcome values. It's not fair. I can't control that. My community my patients are sicker, disadvantaged, different. It's not apples to apples on steroids.
Now a word about our sponsor, ABRIDGE.
Use Abridge to record your doctor's visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!"
How do disparities fit in? Look past your nose.
Can we accept that more than 80% of health occurs outside of the clinical space through our genetics, behavior, environment, and social circumstances? Then can we accept the incredible vastness of the range of combinations of genetics, behavior, environment, and social circumstances? That one's easy if you look past your nose. Let's think specifically about disparities among people and communities and comparing providers - hospitals, clinicians, and clinics. I hunger for the data and information about the range of combinations of non-clinical determinants of health and seek stories about how people act on that information. Are individual patients and caregivers that providers serve pretty much the same, or do some have more or less money to spend, more complex conditions, speak different languages, have more or less free time, distance to travel for care? What about clinicians? Do their disparities match the communities they serve? Do communities include few specialists or many? Is it one business or many business town? Are the providers on salary or paid by the piece? These are a few of many factors that might influence the quality of care and health outcomes. In my experience, data about non-clinical disparities are difficult to collect, seldom standardized, and often wrong. If the data is tough, the information gleaned can be questionable. We sometimes rely on proxy measures - an indirect measure of the desired outcome. Think mortality rate as a proxy for quality of care. Granted, death from something usually benign is probably poor quality. But it's a rough proxy. Proxy measures often feel like looking under the streetlight for keys lost in a dark alley - it's where the light is.
Risk adjustment
Technically,...
...more
14min
February 27, 2022 Feb 28th Rare Disease Day: Zebras and Equity #159
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 Advisory Panel. You pushed all sorts of buttons for me. Good buttons. And I reached out and hence this call. I wanted to start introducing yourself to talk about what was going on in your life when you realized that health was fragile.
Doug Lindsay: Yeah. I learned that from my mom. From about 18 months on, it was very challenging for her to pick me up. She did pick me up when I was five and choked on a jawbreaker and saved my life. But that was generally the level of the situation, it would have to be for her to risk doing something like that. My mom just had a lot of health problems. And we had no answers, and she was a make-do person. She didn't see herself as sick as she was, even as the years progressed. Fourth grade was the last year she could go to a parent-teacher conference because, in the fifth grade, I was on the second floor of the school. That's not usually what you expect of a woman of 38 is to be able to have to forgo meeting with teachers if there are 12 stairs. My mom was just very sick for my whole life increasingly. And then also my aunt as well. Every day, I would play basketball or something during the summers, but I would swing by my aunt’s to tie her shoes because she needed the shoes tied well and tightly. But she couldn’t even tie them herself. It seemed very much like part of life, but it was in the sense that it could be something that was just part of the tapestry of your day, but it was also something that was part of life. It wasn't like everything was going fine, and then there was one day you realized the fragility.
Personal medical consultant finding answers
Health Hats: Let's do a more traditional introduction. And tell me a bit about what you do professionally and something you do for fun.
Doug Lindsay: So much of my life is wrapped up in the health sagas and odysseys that I've been a part of that those answers make sense more when you understand my story. But right now, I am a personal medical consultant. I am somebody folks with some means can hire. And I join their family for a year and see if we can get someone with a rare or complex condition unstuck. If they're stuck in the medical system, we try, I try and figure out how and work with them to get them unstuck. Get them a diagnosis or a care team working or get them treatment. That's a challenge because when you're neither the patient nor the doctor, you're almost like the zookeeper that brings the pandas together and goes, oh boy, I hope something good happens. After all, you don't have an intrinsic authority anymore. Either the moral authority of that of the patient or the authority of the physician. So that's what I do professionally. I like to drive. I like hitting a back road and that kind of thing. And I've been looking at getting back into fly fishing, which was one of the things I loved before I got sick at 21. I worked in a fly shop and spent my high school years in a fly-fishing club with folks who were decades and decades older than me.
Rare disease as an equity challenge
Health Hats: The thing that inspired me was in the conversation in the rare disease advisory panel at PCORI, you were talking about rare disease as a disparity as an equity challenge. Could you talk more about that?
Doug Lindsay: PCORI is the Patient-Centered Outcomes Research Institute. They had a congressionally mandated list of things they needed to do when they were set up. One was a Rare Disease Advisory Panel. And if there's going to be a panel, then somebody's got to be in charge of it. So, it's another fellow named Matt and me. We have about 15 or 20 panelists from every walk of life from industry and things. I represent patients, and some others do as well. We were in this meeting, and we were talking about the future of PCORI, an amazing organization set up ten years ago to put motive, to put money, and push behind an agenda aimed at getting information that helps patients decide what to do at the bedside, patients, and doctors. It is a great mission but fitting rare diseases has been challenging. It may be far easier to run a study with 5,000 or 15,000 heart patients comparing one treatment to another than to find a rare disease study because 19 out of 20 rare conditions don't have a recognized treatment. If most of your research is comparative effectiveness research, comparing treatment A to treatment B, and you have a population with no identified treatment, you've got a bind. But that bind extends so much further. Even though I lived the rare disease life because of my family, I was unaware that 25 to 30 million Americans suffer from a rare disease. Then it was easy to find that the average time to diagnosis is seven years. For me, if you don't count me diagnosing it, it would be six years. But for my mom in 1984, on a page in her records, all the information was there,...
...more
35min
February 20, 2022 In the Wild: Data to Info to Action & Back & Again #158
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 interoperable data, sufficient standards, tested methodology, single person ID. The excuses are truly massive challenges. Yet it’s not good enough that we stop after we do the easy stuff. OK, I take that back. It’s not easy. But it’s what we have an industry for - systems, processes, and money - to do that kind of research. But we haven’t figured out how to take the next step to make it meaningful to more people. OMG, what a rant.
Let’s narrow this frustration to medical decision-making (I know, not so narrow). We know that making decisions/choices about our health is complicated. We know that making choices as individuals relying on studies of populations, groups of people, is fraught – as much art as science. Awareness of disparities in healthcare delivery and research just adds to the fraughtness. I don’t think that’s even a word. I’ve been perseverating for decades about decisions people and their clinician partners make, tracking those decisions and the resulting outcomes in real-time or at least over time. In my naivete, I thought this was brilliant and simple. I bare my humility here once again. But like a dog with a bone, I can’t let go. Today, I want to add to the complexity by speaking with two informaticists, asking them about the dilemma from their specialized point of view. Informaticists are experts in information, data, and decision-making. Bryn Rhodes and Laura Marcial specialize in creating, testing, and implementing apps for clinicians and patients while making decisions together.
Introducing Bryn Rhodes and Laura Marcial
Bryn Rhodes has been a software developer for more than 20 years, focusing on information and database management systems and applications. He has been a member of the Health eDecisions and Clinical Quality Framework Initiatives (CQF) working on the problem of sharing executable clinical knowledge and is currently working on bringing the standards that have been developed in the CQF initiative to FHIR® (Fast Healthcare Interoperability Resources). FHIR standards define how healthcare information can be exchanged between different computer systems regardless of how it is stored in those systems. It allows healthcare information to be available securely to those who need to access it and those who have the right to do so for the benefit of a patient receiving care.
Laura Marcial is a data scientist from RTI (RTI is an independent, nonprofit institute that provides research, development, and technical services to government and commercial clients worldwide). Full disclosure, I serve as an independent consultant to this independent institute. Laura describes herself as a human-centered design enthusiast, working in clinical decision support development, implementation, and health IT (Information Technology) evaluation. Laura Marcial understands both the human and the tech sides of clinical decision support and has several years of experience explaining it to me and us. Today’s episode is Laura’s third as our guest.
Realizing the fragility of health
Health Hats: Welcome. I appreciate both of you, Laura and Bryn joining us this morning. I wanted to start with an introduction; when did you first realize that health was fragile? Laura, do you want to start?
Laura Marcial: Sure. I've been working in the health domain after growing up as a doctor's child for most of my adult life. I would say that there was a period when I was a young mom trying to help my clinical father navigate a major procedure. And we were trying to determine the right path and ended up going to dozens of clinical appointments to decide which path would work the best for him. It was an eye-opener how complicated the system and how manual the process can be. Like. One of the key issues was passing around medical images, getting them to the right people, making sure that everyone was looking at the same thing. Making sure that it was the right kind of information to decide. Yeah, that was a complicated process. And then the whole time I was railing it, why isn't this easier? Why is this so difficult that you have to know what you're doing and how to navigate the system
Health Hats: Bryn, how about you?
Bryn Rhodes: I don't know. That's a tough question. I guess it would be when I was probably in elementary school. And my mother was diagnosed with MS. That would probably be when I didn't understand what was going on, but yeah. And I know it wasn't good, so that would probably be it.
Health Hats: You were in elementary school, so probably you weren't thinking about decisions made. Now your career is involved with health decision-making. How did you start becoming aware that there were decisions to be made in health and medical care?
Bryn Rhodes: I guess it's probably pretty late in my life. But I remember taking my father-in-law to an appointment,...
...more
40min
February 06, 2022 Health Choices. Knowledge + Behavior. Your Life Depends on It.
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 people in person, and then you see them in person. It's great.
Health Hats: It is great. All right. So, thanks for joining me, joining us. I've been looking forward to this conversation for months. I love your book. Your life depends on it. What you can do to make better choices about your health. I will put links to the book in the show notes so people can check it out. I'd like to start with, when did you first realize that health was fragile?
Talya Miron Shatz: I think if I can go politician on you, Danny, and just change the question, I guess for me, I always realized health was fragile because my mom had huge eye problems when I was like in sixth or seventh grade. No, when I was six or seven, not in sixth or seventh grade, I was little, and she was slowly getting cataracts and could barely see. Then she had an operation. She was very fragile. Like she could only walk around very slowly. And at the same time, there was a movie about a woman going blind. So, I would practice, I had been blind, like just in case, can it seem to very tangible option? So that's about fragility and vulnerability, but I guess the way I want it to change the question is to change it to what I do. And I'm a psychology professor, and I studied medical decision-making. So, I'm a full professor in Israel. I'm a visiting researcher with the University of Cambridge. There's a lot of research that I do. And I work with companies and startups, pharma and advertisers, and whatnot on medical decision-making.
Genetic counseling and medical decision-making
Talya Miron Shatz: But the reason why I found medical decision-making so fascinating was that I sat in on a genetic consultation. So, it wasn't mine. I was just sitting in because I was invited to teach at the medical school to teach genetic counseling students. I was a Ph.D. student at the time, and I said, okay, but I already have three kids, and I never had genetic counseling. What does it look like? And I sat in on a consultation. So, on one side of the table was a great genetic counselor with who I'm still friends. Like I spoke to her today. It's maybe 17 years after that first encounter. And she's great. She's very smart. She's very knowledgeable, and she's very personable, patient, compassionate, everything perfect. On the other side of the table was a couple who couldn't hear well. They couldn't hear at all. And they had an interpreter with them, and they had her little boy with, and it was a small room, and it was crowded. Even more, crowded when we started talking about genes and chromosomes. It became packed, and I could see that it was puzzled and hadn't left me. The way that you can have the best professional with the best intentions and the most knowledge and the most patients and people who need to listen and understand and process what they're being told under less-than-ideal circumstances because they come to ask about their pregnancy, and they have questions. And it's loaded with emotions, and they didn't even have a decision to make. They just needed the information. And when they left, I thought, what would they remember? What will they make of it when their family asks? So, what do they say? What does she say? What will they know? And that's when I understood that it's just difficult, even under the best of circumstances, and we don't always benefit from the best circumstance.
Personal goals, exploration, universal truths, and decision-making
Health Hats: Yeah. When I think about decision-making for myself and my health, I think about what I want from life. First, do you think that perception that I have is true, and how can that be easier? And in my experience, that's a tricky question for people to answer and not just lay people, everybody, professionals as well, doctors, nurses. It doesn't seem like it's a way people often think, or there are large groups of people that, that is a foreign way for people to think, what do they want from life? But if it's true, that's an important part of making decisions.
Talya Miron Shatz: My, you have big questions. I think it's true for you. I think it's very true for you. I believe some things are universally true, and I will fight for them. And one of these things is that people should receive information that they can understand. This is universally true. Okay. Now they can decide. They can say I don't care about your stupid information. And that's fine because that's how they want to decide. They can say that I will read the New England Journal of Medicine article, and I don't need your information. They can do whatever they want, but they should be served information that is understandable and makes sense to them that they have enough time to decide. That's those things. That's universal for me. That is crucial. I'm a psychologist. I have a Ph.D. in psychology, not a therapist. I studied decision-making. So,...
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44min
January 30, 2022 Camino de Santiago, Spain. Pilgrimage of sounds. #20 & 156
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 crowing. I'll get it.” But no, it stopped. I recorded for 10 minutes, no crowing. But I heard my foot tapping, the elevator humming, dogs barking, the wind through the leaves… We kept chickens when we lived in West Virginia. My wife loved them. Messy, stupid animals to me. Not like bees. I enjoyed keeping bees. But then I was the one that slaughtered the chickens. I was an amateur butcher at best. Somebody had to do it. Can't keep chickens and let them die of old age. Roosters are a hoot, though. Pompous, full of themselves, and useless - except for procreation and the morning alarm. Yet, see, even no sound has a sound story.
Now a word about our sponsor, ABRIDGE.
Use Abridge to record your doctor's visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!"
Travelogue
In case you think I'm not actually traveling. Here are some clips of my travelogue. I felt so shy and hesitant just standing there speaking into my lapel. I should have pretended I'm on the subway talking into my cell phone. I know way more personal details about some people's lives than I care to.
Day 1 to 2 Madrid to Villafranca del Bierzo
Day 1 on the Camino de Santiago was our flight from Boston to Madrid on Iberian Airlines. I had an economy premium seat and my wife had an economy seat. I sprung for the more space and she didn't. The more space is actually very nice. Usually I gate check my electric wheelchair and I retrieve it outside the plane. But today when we got to Madrid - no chair. Turns out they baggage checked it. So, I have to go to baggage claim and be taken by an attendant in a wheelchair. It was 6 a.m. There really wasn't enough staff and I ended up in a holding room with about eight other people in wheelchairs. We were dropped off in this holding room and we couldn't go to baggage claim because you had to have an attendant to leave this holding room. I was in the holding room for about an hour and finally somebody came who spoke English. I was quite handicapped without being able to speak Spanish. I got my canes out and was able to walk unassisted to baggage claim where my wife had found my chair in a special area. I would rather have lost my luggage than my chair.
We drove by taxi five hours to Villafranca del Bierzo. We spent two nights there seriously jet lagged. It's six hours later here in Spain than in Boston.
Day 2 to 4 Villafranca del Bierzo to Trabadelo to Herreras
On day two we took a taxi to Ponferrada to see the castle there. This was a two-cane day, no chair. Day three we went to Trabadelo and found a fabulous Auberge run by a Dutch expatriate from Rotterdam. She came to Spain with a fellow and settled in Trabadelo and runs a gastropub and hostel, el Puente Peregrino. Amazing food. The zucchini blue cheese soup is delicious and curry. Not standard Spanish fare.
Day four - Herreras. This time I rode my electric wheelchair seven miles. I was able to go about 98% of it on my electric wheelchair. The route was mostly on paved roads. This was the only section so far of the hundred and twenty-mile walk that is suitable for a wheelchair. 98% meant that there was two percent I couldn’t go. A stretch down a steep slope of gravel underneath a highway, which I couldn't take my wheelchair. A very nice man from Berlin helped us carry my wheelchair down this steep rocky path, but otherwise, we did very well. We walked with a guy from Montenegro. We met people from North Carolina. We walk the several small towns population 200 - 600 people. I love that I can join my wife and friends, but frankly, I'm was bummed out that I couldn't walk. I had to get out of my wheelchair several times to push it for a hundred meters or so to work out the cramps of sitting. I'm glad I'm not totally restricted to my chair. Everyone else is hot from walking and I'm cold from sitting. It's between 50 and 60 degrees here.
Handicapped. Mobility or language?
A few of the places so far that we've been to are really wheelchair accessible. But no less than United States. There are many sidewalk cutouts, but not everywhere. The bathrooms are by far the hardest, then doorways, then space and room for the wheelchairs - very tight. It's a good thing I can get out of my wheelchair and walk some. I carry my canes in my backpack, which is hooked to the back of my wheelchair. But really mobility is not my biggest handicapped. It's actually the inability to speak Spanish. Jose Luis my driver speaks no English. I speak no Spanish. But we've been communicating quite well using the iTranslate app. I enter something. He reads it. He enters something. I read it. Or he's driving and we speak into the app....
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20min
January 16, 2022 Sustained Community Engagement-Rousing, Nimble, Complex #155
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 Health Improvement Learning Institute, which regularly offers Community Health Worker training. Jamila holds a Master of Arts in Law and Diplomacy from Tufts University.

Janice John, PA, is a Medical Director at Cambridge Health Alliance, an experienced Community Health Clinician, Leader, and Educator with a passion for shaping our health care delivery system to improve the health of our communities. She’s a transformational leader, alliance builder, strategic thinker, creative problem solver, and collaborator.

Health Hats: Jamila and Janice, thank you for joining us today. I'm delighted. Could you guys introduce yourselves to our listeners and readers and tell us a bit of yourself and how you got to this place of investing in community engagement? Janice, you want to start.
Janice John: Sure. I'm Janice John. I am a PA at the Cambridge Health Alliance. PA physician assistant and I work in primary care at CHA and have been with the organization for about a decade. And worked in homeless health care for nearly a decade before that. Working really in community medicine has been the entire arc of my career but often really from the perspective of a clinical provider.
Health Hats: Okay. Jamila, tell us about yourself. Thank you.
Jamila Xible: My name is Jamila Xible. I work as a Director of Health Education and Access at the Cambridge Health Alliance. It's my road to where I am is not straight. I had a lot of detours, but my undergrad in social work in Brazil in a time when Brazil was opening from a military dictatorship, and there was a lot of community work being done. And I was deeply involved, and that stopped a little bit when I came here. But as I aged and matured, I came back to this work.
Communities served by CHA
Health Hats: I asked Janice and Jamila about the relationships with the communities CHA serves.
Janice John: I started leading our COVID outpatient clinic in March 2020. Our clinic took care of patients upstream from the emergency room and evaluated patients through the first couple of weeks. Early in the pandemic, it was apparent that the communities hit the hardest were immigrant communities. And that there were some significant differences in who came into our clinic, our outpatient clinic, who called in with symptoms, wanting a test, et cetera, et cetera, and who ended up in the ER and needed hospitalization. So, people most likely to come in for upstream care had differences within sub-communities. It wasn't something that we could figure out with a clinical lens. We needed to understand from the perspective of the communities. And because of that, I reached out to our community health improvement team. Jamila is our rock star for community engagement. And we brainstormed to try to think of ways to figure this out. And, but it was really seeing the discrepancies and disparities really in our communities that made us try to figure out what we were not doing, not seeing, not understanding.
Most healthcare occurs upstream from hospitals and clinics 06:47
Health Hats: Real quick, say something briefly about upstream. What does that mean?
Janice John: The way I think about care is that most health doesn't happen in the health system. Most of health happens far before anyone walks in the doors. What influences health is a series of things that happen in life in built community, et cetera, et cetera. And when COVID was emerging, we had a playbook from China that focused on hospitalization. A lot of the national conversation influenced by what was happening in Italy was around ventilators. There were entire working groups trying to figure out who would get ventilators. And our system said we are an outpatient and community care delivery system. This is not necessarily the proper roadmap. This is not where we need to focus all of our energy. And we need to be thinking about what we do before the hospital. We anticipated that the ERs would get filled, that the hospitals would get filled, and we wanted to build something upstream.
Serving communities of immigrants
Jamila Xible: I feel like I'm part of a community of immigrants. And when I look at what happened at CHA, those are the folks that are suffering right now. I'm so grateful that I can be involved in this work with people like Janice. Like our clinical team, we work in an organization where folks have that sense of mission. I talk to people from other hospitals, they ask, what the physicians, the what? The PCP is the what? They come with you to the community. Yes, they do research. Yeah, they do. So, it's an environment. Everybody seems to be in the same boat. This is our mission. We're going to try to improve what is going on out there. So, my role has evolved. Basically, we do a lot of community health worker training, and then we work with the community health workers that we trained in the community to improve the health,...
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41min
January 09, 2022 Sound and Noise. Senses and Voice. A Reprise. #19 & 154
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 abilities below the neck). He was headed down the hall learning to navigate his motorized wheelchair with his mouth stick. He couldn't swivel his neck. Coming toward us was a man in his late 40's who had had a severe stroke. He was hemiplegic (no function on his left side). He was learning to mobilize in his wheelchair using his right arm and leg. He was listing heavily to the side and visibly drooling. His 20 something wife dressed as for a dinner date was trailing behind looking thoroughly disgusted. My guy glanced over as he took his mouth from the joystick and said, "Glad I'm not him." Gotta love perspective and appreciate what you do have.
Anyway, is this series we've heard from a young adult in high school and in college and a parent. I have 2 interviews completed with people in their 30's, already through their transition, as well as other people in professional support roles for those young adults.
Mobility enhancers rule!
OMG, I'm going to Spain for two weeks. I first went to Europe when I was 17. I hitchhiked from London to the Lake District, to Amsterdam, Paris, then Scandinavia. I went with my sister's boyfriend who ditched me. It was my first experience I was alone for 2.5 months. I had a great time. I only spoke English and met lots of people - native and fellow travelers. People took me into their groups, their homes, their lives. I mostly slept outdoors or in hostels. My wife and friends are veteran hikers who annually hike for a week or two - the Grand Canyon, Brice Canyon, and more. This year it's the Camino de Santiago pilgrimage in Spain. I don't hike. I've always stayed behind. But, Spain? Forget it. I'm going. Ed, a colleague at the Agency for Healthcare Research and Quality, introduced me to a travel agent in Madrid that he and his disabled father used for the hike a couple of years ago. This agent took my wife's hiking itinerary and booked us wheelchair-accessible rooms and a driver for me. I'm ecstatic. Mobility enhancers rule!! I will be recording the trip and will share it here in future episodes. Stay tuned.

Now a word about our sponsor, ABRIDGE.
Use Abridge to record your doctor's visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!"
Gazing past our navels
Next, what am I doing with my life? My mission is to empower people as they journey toward best health. Best health = peak capacity. Getting the most out of your genetics, your circumstances, and your abilities. Such wide-open possibilities and opportunities. My primary vehicle is my presence: my varied experience, my words, and my heart. As an extroverted person of privilege, I seek and share what works for people and what doesn't. I find tables of healthcare governance, design, operations, and learning to sit at and I give voice while working to open doors for others to join or replace me. Others with different experiences and skills. These past couple of years I've focused on informed decision-making along the health journey, communication and dissemination of research and learning, pain management and reducing opioid use, and transitions of care for people with complex and chronic conditions. I'll continue these efforts as I am able. Recently, I've been inspired to home in on health equity and building the capacity to learn and grow (inspired by my new podcasting friends and colleagues, Ame Saunders of State of Inclusion fame and Maria Xenidou of Impact Learning fame. You can find links to their podcasts and work in the show notes). Neither of these inspirations are health care focused. There's a lot, we in healthcare can learn from gazing past our navels.
Differentiating sound and noise
This leads me, finally, to the experience of podcasting and learning the craft of podcasting. Learning podcasting from Seth Godin and Alex DiPalma's Podcasting Fellowship has supported me as I fine tune contributions to you. I have entered and enriched a world-wide nurturing, challenging, informative network of citizen experts. I'm already full of myself. This community appreciates me, cheerleads for me, seeks my wisdom, and gently points out where I can grow and improve. As some of my abilities diminish, my senses and voice expand. I can better differentiate sound and noise. I can use sound to listen more deeply. Just as two canes and an electric wheelchair maximize my mobility, the podcasting journey strengthens my voice and my presence. Hang on!
Reflection
Well, this 2019 episode holds up pretty well in spite of some setbacks and bumps in the road. The charge I felt from completing our part of the Spanish Camino continues to this day. Elation that I could do it! I am not my disability. My disability gives a tint to my spectacles (both defini
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13min
January 02, 2022 Coaching for Peak Performance and Best Health – 2021 #153
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 produced. True for the audio and video, not so much for the transcript.

The start of a business relationship
Danny van Leeuwen: Jan Oldenburg, you know that I love you.
Jan Oldenburg: I love you, too, Danny.
Danny van Leeuwen: I appreciate our relationship as it's developed over the years. At first, we were human curious, and then we started doing projects, sat on teams together, provided counsel to each other, and strategized in several different forums. It was always rich. When I was appointed to be on the PCORI Board of Governors, I was both full of myself enough and smart enough to know that I was the right person to be selected. I'm good at what I do. There was no way I would reach my potential without help and regular counsel. I immediately thought of you.
Jan Oldenburg: I'm honored.
Danny van Leeuwen: Thank you. So, we developed, and I insisted that you were very generous and excited and would have done this work pro bono for me, with me. I insisted that we have a business relationship. Part of that is because you got to walk the talk. We insist that people need to be paid for their work. And then there was another not so noble motivation: people with whom you have a business relationship will naturally be more responsive because they have a business relationship. I wanted that. So, we've met over fifteen months, pretty much monthly. And for me, I think the most important thing that's happened is recognizing that I needed a filter between my brain and my mouth.
Jan Oldenburg: I have that problem, too, actually. So, I really understand that.
Managing the swirl of me
Danny van Leeuwen: It's good to say, okay, wait a minute, before I go off half-cocked, let's just chew on this with somebody else, with Jan and clarify, clean it up, focus. Yeah. And so that's good. And then I think it's bringing all of the various threads that I'm involved in. So, just as I am not multiple sclerosis, I am not PCORI board. I am Danny van Leeuwen, and I have my fingers in many pies and am working on lining that stuff up with life pace. How much energy do I want to be putting out in total, in what buckets and what issues, and balancing all that? So, that's my introduction. What I'd like to do here are two things. I would like to give you a chance to just talk about coaching and your feelings, approaches, and philosophy, and if you want to apply any of that, you can say anything - the good, bad, and the ugly about me is fine. And then let’s do a year in review.
Coaching as a parent of a teen
Jan Oldenburg: Perfect. Coaching is an interesting role for me. I hope this won't offend you, but I think this applies whether it's coaching you or coaching my adult children. One of the things that has been a critical lesson for me in building a relationship with my adult children is figuring out that they don't want me to fix their problems. They want me to be a sounding board. And whatever advice I am trying to give them, it's not the point of the exercise. The point is about helping them figure out what they want to do, their instincts, and where they want to go. I bring that, frankly, hard-won lesson, and they will tell you; I still struggle with it. But that's one of the things I've tried to bring into this relationship that this isn't about it. If I'm doing the job well, it's not about collaborating to solve the problem. It's really about my being an echo and a witness and a sounding board for you to figure out where you want to go. And that's not the easiest part of it for me, quite honestly. Cause I also like to solve the same kinds of problems. But it has been wonderful for me to be able to watch you. And frankly, your focus and resilience in approaching who and what Danny is at this moment in time. And his roles and, if anything, helping you to hone that a little bit more or tune it up, or think about the ways, what you really want to accomplish in each of these forums and how you can best accomplish that. And I hope that's how it's felt to you.
Advice, reflection, self-reflection, shades of grey
Danny van Leeuwen: Yeah. It does. I think that being a reflection is important. So, hearing back, you do a lot of, ‘this is what I'm hearing you say,’ Sometimes it sounds right. And sometimes it doesn't. I do like your opinions or advice, ‘if it were me, I would do, I might do this.’ I find that helpful. I, in no way, feel like that's okay, then I'm going to do it. Cause I'm just not like that. I think we are people who are not black and white. We are people with many grays, and that gray is in and of itself gray has so many tones, and it's where to try next.
First, build trust
Danny van Leeuwen: I feel like another thing that happens is the follow-up of okay, what did we start with? We started with trust, building trust with my new colleagues. I was in a new role....
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47min
December 19, 2021 Embedded Researchers-Translators, Connectors, Stewards #152
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 programs educating patients about research design. He and his colleagues’ efforts encourage patient engagement across the research continuum-from research question design to results dissemination.
Health Hats: Matthew, thank you so much for joining me. I appreciate it.
Matthew Hudson: I'm honored to be here.
Introducing an embedded researcher
Health Hats: Would you please introduce yourself and include the journey you went through to write that excellent article about the embedded researcher.
Matthew Hudson: Sure. Sure. Again, thank you very much for the invitation. It's always great to speak with you. For everybody else, my name is Matthew Hudson. You also call me Matt, and I currently work in a health system in the Southern portion of the United States. Professionally speaking, you could describe me as an embedded researcher. When I use the term embedded researcher, I describe someone possessing a research background. That's typically someone with some sort of academic or research degree, but not always. But that person would immerse themselves in a health system or some type of clinical setting. And they do that to collaborate with patients and healthcare providers to investigate problems people face in actual world clinical practice. And I help them figure out ways to perform better in whatever way you would define better. But when you become embedded in a health system, you realize that the people you work with grew up and are from a different culture and neighborhood than you. And of course, I'm speaking literally, but I'm also speaking figuratively. Because to the latter, my education didn't look the way that a doctor or nurse's education looked. We learned different things, and we learned them in different ways. Some hospitals value that other skill set that I might bring, and they asked me to help figure out how to solve problems in assisting clinicians in figuring out how to provide care in what can be a real black box for both patients and providers. You can easily minimize or just plain forget the importance of maintaining the wellness of a community. You have to be equally invested in figuring out how to encourage prosperity in a community and not just treat illness for a small group of patients. So, I've been challenged to retain that perspective, being embedded in a health system, and there's no instruction manual, at least not that I've found for how to work as an embedded researcher.
Skillset of an embedded researcher - like a musician
Matthew Hudson: Now, there are a set of skills that people expect embedded researchers to know and to apply, but that's not the same as teaching one how to be an embedded researcher. So, for example, if somebody asked you how to be a musician, I don't know that you would say you have to understand how to apply major and minor scales. And you have to know how to execute a chord progression or plug in your guitar. Those are all competencies. They don't tell you how to be a musician. And right or wrong, when you say the word musician, there's an image that comes to mind. And it's not entirely somebody playing a scale. It's it comes a part of their way of being. It's a vocation. It's a way of living your life. And it seems to me that people assume that you can tell what a better researcher is by what they do. And what I would argue is you have to dig deeper to understand embedded research, and you have to think critically about who embedded researchers are. And there's no instruction manual that I know of to teach someone how to be that. So, I just provided in that article some general thoughts about how to live imbedded research as a vocation, for better or for worse.
Embedded researchers in the community
Health Hats: So, I love this idea. I had experienced when I worked at Boston Children's that there was an embedded researcher in the nursing department. So, she was a nurse researcher who built a bridge between the patients, the clinicians, and the system and helped formulate the study question design and execute the study. And she was familiar with a lot of different cultures, both internally and externally. And I thought that a lot of what she did was bridge-building, bringing her expertise to bridge building. But as I'm thinking about one of the things I like about this is the. I just spin off into other things. Like the other day, I was talking to a friend who told me about one of her colleagues who was a first responder in his community. And he was a researcher. That was his vocation, and his volunteer work was as a first responder in his community. And so, he found himself developing into an embedded researcher in the first responder community. And I want to talk to him some more about that experience. But the point that I've been thinking about with your work, your writing,...
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50min
December 05, 2021 Telling Stories for Different Brains #151
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 episode was the anniversary of my son's death. And I had this video, a VHS video that my boss at the time had videoed an interview with my son at my 50th birthday two months before he died. I scraped the audio off that video and then told stories about our experience together, especially in his last couple of years. I didn't interview anybody in that first episode. But it was like, oh my God, I held my nose, I took a drink, and jumped right into the possibilities of audio. And I didn't add music until a few episodes in. I have a musician cousin, and I was talking to him, and he created some pieces for me to use. And so that opened up my mind to the possibilities of music and, oh my goodness, I'm a musician.
Following my nose
Craig Constantine: How did things become possible when you realize that you had, it's almost like a cubeville, like a giant old office space where you have all these cubes. When you stand up, it's like the whole everything is different. You just must go for it. When you stand up and look around, you suddenly realize that you had the space you were in. All these parameters are artificial. What is the thing that's currently like when you're creating your show? What's something that you're currently most curious about? Is it the other people? Is it the topics? Is it trying to succeed at a kind of communication?
Health Hats: Yes. I feel like it shifts. I'm in this business, healthcare, and am in this business about learning. And so, I follow my nose and whether I meet people who are, or I know interesting people. And so, it's just the individual. My first kick was a series with young adults with complex medical conditions transitioning from pediatric to adult medical care. And I interviewed a series of people, the young adult, or was a young adult, a parent, and then the two of them together, and I did a series. Then I did a series about chronic pain. So, it depends.
Ton of work, keeping it fresh and manageable
Craig Constantine: Do you okay. All right. You're a smart guy, and you do it a lot, and you're curious. So, one question I have is, yeah. How do you reign that there are only so many waking hours and you can only do so much stuff? So how do you reign that in? And I'm wondering if audio, oh, this has to fit in a podcast. Does that help you? I can't do that. That's a visual concept.
Health Hats: No, that's never come up, but what has come up is that I did have 145 weekly episodes and 500 weekly blog plus podcast episodes. And just recently decided that each episode takes from six to 30 hours to produce. And so first, I went to alternating interview and on mic episodes, and then recently, I shifted to giving myself two weeks to produce the interview episodes. It was getting to be a lot, just a lot. And so, I appreciate being able to take my time on the interview episodes. And I can play more music. So that's good.
Craig Constantine: The mistress du jour eats all my time, and I go way down the rabbit hole. Are there any other things like either systems or mindsets or processes that you use when you find a new possibility to figure out do I want to pursue this possibility versus continue? If you did a thousand episodes the way you're going now, that would do a ton of good how do you decide whether just to keep doing what you're doing or whether to go in a new direction?
Ruthless editing
Health Hats: I don't know. I just do it. That's not the kind of thoughtfulness that I have. My thoughtfulness is more, what's the story I'm trying to tell. Each episode could be about 20 different things. That's just too much for listeners. What are the two or three that are important? And unlike you, who doesn't edit at all, I'm ruthless, or I'm learning to be a more and more ruthless editor. And I like the editing process. I'm a person whose brain works that I will have forgotten the whole conversation when I'm done talking to you. When I finished reading a book, I had forgotten the book. And so, the editing process allows me to open my brain and store that information differently and appreciate what just happened. "Oh, I didn't know that we talked about that." It's a new discussion. And I do at every episode. I do what I call an article grade transcript, which means that what I know is that at least half of my followers are not listeners they're reading. And I respect that. I started doing transcripts, but audio transcripts are not that interesting. We talk circular in fits and starts. It's not that readable. I do edit for readability, which has a bonus for me. My work is I have developed quite the library of material that, I had the, we'll have a consulting gig, and there's something that comes up well, I've already done that, and I can just pull that. I have the material, whether the product is written, auditory, or video. I've already done the work much of the time, which is helpful.
Process of telling a story
Craig Constantine: Glad to hear you talk about its wr
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21min

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The podcast currently has 252 episodes available.