A child of Holocaust survivors balances pathological optimism with apocalyptic thinking while seeking meaningful ways to channel advocacy in turbulent times.

Summary

In this deeply personal episode, a child of Holocaust survivors reflects on navigating today's global chaos while maintaining hope in healthcare. As a seasoned healthcare advocate, they share insights on:

Leveraging privilege for positive change

Finding balance between optimism and realism

Adapting communication strategies for greater impact

The importance of self-care and community support

Key highlights:

Moving from long-form monthly interviews to shorter, more frequent content

The role of music as a healing force

Following Helene Epstein's "Patient No More" insights

Special music feature: "The Weight" by The Band with Ringo Starr and Robbie Robertson

🔗 Featured on Health Hats Podcast 📧 Connect: [email protected] 🌐 More resources: https://linktr.ee/healthhats

Join us in exploring how health, love, power, and agency work together as we navigate these challenging times. Subscribe for more insights on healthcare advocacy and personal growth!

#HealthcareAdvocacy #PatientVoice #Healthcare #Podcast #SelfCare #CommunitySupport

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

You know who you are. I'm grateful.

Podcast episode on YouTube

Inspired by and Grateful to

All of you

Links and references

Helene Epstein's Patient No More  Chapter 2: The Very First Thing You Should Do, Today

Episode

Proem

Greetings, I’m trying to make sense of the chaos and disruption all around the U.S. and the world. I struggle to focus and direct my energies. I doom scroll, fret, and get mad at myself. As a child of holocaust survivors, my pathological optimism collides with my apocalyptic thinking. I’m afraid for our safety, health, and care. We need teams, organization, trust, and protection more than ever.

Leverage Privilege

Coming home from Ann and my inspiring trip to Cuba, I feel overwhelmed by our privilege. We live below our means and have no dependents. Our mortgage is paid off, and we’re in love. I have all the toys I need. I can take calculated risks. I don’t need a black market - yet. I’m seasoned, connected, and as healthy as I can be. My superpower is accepting what is and adapting. I have a platform and understand the infrastructure needed to support action promoting best health and care, whether adapting or resisting. How I miss Mighty Casey Quinlan!

Rebels in Health

My friends and colleagues, our work must continue—whatever we can manage minute to minute. We know many people and are skilled at what we do. Susannah Fox says in Rebels in Health that we are seekers, networkers, solvers, champions, and communicators (my add). That's the mix of Rebels in Health we need right now.

Navigate

I’m oriented to action. What action? Where and how should I increase my presence? Where do my peeps share information - Substack, LinkedIn, YouTube shorts, Instagram, TikTok, Medium, Patreon, BlueSky? Yikes!

I’m connected to a network of podcasters. How can we leverage and channel our voices? I can and will assist rebels and champions when and where I find them.

I’m staying in the health and care space. It’s what I know and where most of my hats are. Health, love, power, and agency fit together – hand in glove.

Adapt

How can I adjust my practice patterns and focus during this chaotic time? I will reduce my long-form work—monthly 30–60-minute interviews with time-consuming multimedia tentacles—to shorter form, more often, to enable more time for listening and caring.

Self-care rules. Music, a healing force, stays, even increases. I need joy, celebration, and rest every day. I need inspiration (you).

 Call to action

What do you do for self-care? How can I support you on these platforms? Feel free to reach out to me on any platform or medium. I’m here to listen and will do my best to respond. While I figure out the best channels, you can email me at [email protected]. As usual, you can find everything Health Hats here https://linktr.ee/healthhats.

Music for the Soul

Today’s music selection is The Weight by The Band Featuring Ringo Starr and Robbie Robertson | Playing For Change | Song Around The World.

Voices for the Mind

I’m following Helene Epstein’s Patient No More  Chapter 2: The Very First Thing You Should Do, Today. The easiest weapon against misdiagnosis is in your phone.

Podcast Outro

I host, write, and produce Health Hats the Podcast with assistance. I'm grateful to you who have critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. Love ya, see you around the block.

Related episodes from Health Hats

https://health-hats.com/pod226/

https://health-hats.com/pod171/

https://health-hats.com/pod181/

Artificial Intelligence in Podcast Production

Health Hats, the Podcast, utilizes AI tools for production tasks such as editing, transcription, and content suggestions. While AI assists with various aspects, including image creation, most AI suggestions are modified. All creative decisions remain my own, with AI sources referenced as usual. Questions are welcome.

Creative Commons Licensing

CC BY-NC-SA

This license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format for noncommercial purposes only, and only so long as attribution is given to the creator. If you remix, adapt, or build upon the material, you must license the modified material under identical terms. CC BY-NC-SA includes the following elements:

   BY: credit must be given to the creator.   NC: Only noncommercial uses of the work are permitted.

   SA: Adaptations must be shared under the same terms.

Please let me know. [email protected]. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

Successfully sharing & acting on research findings depends on active partnerships with the implementers – patients, caregivers, & their clinician partners.

Summary

Claude AI consulted to create this summary

The 2024 Academy Health Dissemination & Implementation (D&I) Science Conference revealed a significant gap between researchers and implementers (patients, caregivers, and their clinician partners). While D&I science studies how to share and apply research findings effectively, the conference highlighted that implementers—the very people meant to use these findings—were largely absent. Through interviews with attendees, key barriers emerged: high conference costs, lack of deliberate outreach, and content primarily designed for researchers. A compelling example from Ghana demonstrated successful implementation through radio drama and community health workers, suggesting that effective D&I requires meeting people where they are, both literally and figuratively.

Click here to view the printable newsletter with images. It is more readable than the transcript, which can also be found below.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digital marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Podcast episodes on YouTube from Audio Podcast

 

Inspired by and Grateful to

Anonymous, Bernard Appiah, Bryan Ford, Catherine Hoyt, Nadia Sam-Agudu, Tatiana Nickelson, Greg Martin, Kristin Carman, Aaron Carroll, Susannah Fox, Eric Kettering, Rodney Elliott, Lisa Stewart, Ellen Schultz, Kathleen Noonan

Links and references

The Communication Initiative Network Bernard Appiah

Bernard Appiah's publications  Fascinating!!

Nadia Sam-Agudu recent publication. Check this out.

St. Louis Sickle Cell Association

University of Colorado Accord Center.

See Infographic here.

Communication and Dissemination Strategies To Facilitate the Use of Health and Health Care Evidence

Dissemination and Implementation Science to Advance Health Equity: An Imperative for Systemic Change

Managing Clinical Knowledge for Health Care Improvement

Embedding implementation science in the research pipeline

A Systematic Review of Patient Engagement and Its Organizational Impact

The Application and Evolution of the Practical, Robust Implementation and Sustainability Model (PRISM): History and Innovations

Engagement in Research: PCORI's Foundational Expectations for Partnerships | PCORI

Toolkit resources | Consumer Engagement | VCCC Alliance

Building the table together: Lessons on authentic community engagement from INSPIRE

Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care – Susannah Fox

Episode

Proem

Learn with people on the journey toward best health. That’s my tagline. Getting to best health involves many health and care decisions, big and small, day-to-day.  The learning part includes a collaboration between patients, caregivers, and their clinician partners using evidence and experience to inform health and care decision-making. Unless implemented by this triad of patient, caregiver, and their clinician partners, evidence or research is useless, merely ink on paper or bytes in space. Research is rarely implemented unless it’s disseminated (shared). Sharing means spreading the word - disseminating research findings to deciders. This podcast is a dissemination tool, along with conversations, conferences, scientific journals, social media, sermons, newspapers, and books. Implementation is doing something with the research results, like modifying a habit, changing a workflow, taking a pill, or getting help.

Share and Use: Dissemination and Implementation

Most industry investment in dissemination and implementation (D&I) of research results focuses on providers – clinicians and medical institutions, not patients and caregivers. Why? Patients and caregivers are the deciders, the end users, and implementers of their health and care decisions. I prioritize directly sharing research results with patients and caregivers in my advocacy work. I’m grateful that the Patient-Centered Research Outcomes Institute (PCORI), where I am a member of the Board of Governors, strives to meet the challenge of D&I to and with the public.

2024 Academy Health D&I Conference

Whenever I prepare for a conference, I come up with two questions to ask people I don’t know. When I prepared for the 2024 Academy Health’s Dissemination & Implementation Science Conference, I decided to ask, “How do you scientists partner with patients and caregivers in developing your D&I studies?” and “Why don’t more patients and caregivers attend this conference?” The first three people I asked looked at me blankly. Was I having a stroke? Was it my wheelchair or my hat? Then I shifted and asked, “How do you scientists partner with implementers to develop your D&I studies?” Eureka, now everybody I asked had thoughts and was eager to speak and let me record.

According to Scientists, What is D&I?

Let’s stop briefly and consider some D&I principles and methods that patients and caregivers might find helpful.

- Dissemination science studies the targeted distribution of information and intervention materials to a specific public health or clinical practice audience. The intent is to spread knowledge and the associated evidence-based interventions. Communication and Dissemination Strategies To Facilitate the Use of Health and Health Care Evidence (2012).  More about references in the show notes.

I’d say spreading the right message for the right audience, using the right channels in the right context.

- Implementation science studies the use of strategies to adopt and integrate evidence-based health interventions and change practice patterns within specific settings. Communication and Dissemination Strategies To Facilitate the Use of Health and Health Care Evidence (2012).

I have trouble with the focus on practice patterns, which presumes that clinician behaviors and clinical structures are an effective bridge for research to the public.

Another definition is the study of how best to help clinics/schools/communities implement evidence-based interventions (EBI). Dissemination and Implementation Science to Advance Health Equity: An Imperative for Systemic Change.

This was the 17th annual D&I Conference, with several people on the dais mentioning the irony that, on average, it takes 17 years for just 14% of original research to make its way to practice. This is a tough-to-replicate 2000 published study. Managing Clinical Knowledge for Health Care Improvement. On the one hand, it took 30-40 years after discovery for handwashing to become accepted. On the other hand, the Covid vaccination was rapidly implemented.  I’m loving this rabbit hole. A 2024 article in Translational Behavioral Medicine noted that as few as one in seven (14%) of evidence-based practices are ever implemented, with an additional 4–12 years from guideline issuance to implementation, based on 2021 estimates for cancer treatment—embedding implementation science in the research. I can’t help laughing. If 17 years later, this lack of implementation using the pervasive methods must mean that despite spending hundreds of $billion on research, something is fundamentally wrong with our approaches. My conversations with attendees of color, rare diseases, and from countries, not the United States, suggest that they focus more on research with communities and communities with research.

Stay tuned until near the end, I’ll share a radical story from Ghana told by my guest, Bernard Appiah.

Setup and Introductions

I recorded six brief interviews with conference attendees. All but one agreed to let me use their names.

Tatiana Nickelson: My name is Tiana Nickelson, and I am from Texas A&M University. I'm a research assistant professor with a scientific interest in post-traumatic stress disorder, focusing on neurobiology and treatment. After the war in Ukraine began, my colleagues and I from Texas A&M and UT Dell (University of Texas) decided to help the Ukrainian people. We regularly travel to Ukraine to teach Ukrainian clinicians how to treat post-traumatic stress disorder. I'm curious how Ukrainians will apply their knowledge and evidence-based treatments to their policies.

Bernard Appiah: I am Bernard Appiah, and I often tell people that Appiah is a common last name in Ghana, much like Smith is in the U.S. I was born in rural Ghana. My late father served as a town crier, traveling around the village to share information from the Chief with the community. As a child, I would follow him, though I didn't realize then that I might also follow in his footsteps. I studied pharmacy, and while in pharmacy school, I became a student editor. Later, I transitioned to a career as a science journalist before earning my doctorate in public health. Currently, I am an assistant professor in the Department of Public Health at Syracuse University, as well as the director of a nonprofit organization in Ghana called the Center for Science and Health Communication. I often say that I wear multiple hats: pharmacist, science journalist, public health advocate, and so on.

Bryan Ford: I'm Bryan Ford from the University of Colorado. I'm a program manager and manage several projects under the Accords Center....

Demystify AI's evolution, from Netflix recommendations to ChatGPT, exploring how neural networks learn & why even AI creators can't fully explain how it works.

Summary

Claude AI used in this summary

🎙️ What the Heck is AI, Anyway? I sit down with tech expert Eric Pinaud to demystify artificial intelligence. Whether AI-curious or AI-anxious, this conversation breaks down complex concepts into digestible insights.

We explore:

• The evolution from Narrow AI (like Netflix recommendations) to today's Broad AI (like ChatGPT)

• How AI learns through neural networks - similar to how we learn music or new skills

• Why even AI's creators can't fully explain how it works

• The environmental cost: ChatGPT's daily operations cost $700k and use massive energy

Most importantly, we discuss how AI is becoming more accessible - anyone can ask questions and get answers, regardless of technical expertise. Though powerful, AI still needs human wisdom and judgment to be truly useful.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digital marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

When Comic Books Predict Tech Better Than Scientists

Billions of Data Points Walk Into a Neural Bar...

Inspired by and Grateful to 

John Marks, Amy Price, Dave deBronkart, Emily Hadley, James Cummings, Jeff Harrington, Jacob Sloane,

Links and references

Chester Gould introduced Dick Tracy's 2-way wrist radio

Claude 3.5 Sonnet

The first notable AI development in the 1950s

Episode

Proem

Greetings. Welcome to the second episode in Health Hats’ occasional series, Artificial Intelligence Can Work for You. The first episode, AI: Neither Artificial nor Intelligent, demonstrated how I use artificial intelligence to make my multimedia DIY (Do It Yourself) sausage. A long-time reader, John, called to tell me he opens all my podcast notifications and emails yet never listens to anything smelling technical. But he opened this one, and for the first time, he had an inkling of what AI might be. Mission accomplished!

Let's take another step and use our senses to picture this animal, Artificial Intelligence. How much can we recognize? What feels like sci-fi? What smells like BS? How much is inconceivable? Think of cell phone inventor Alan Gross, who conceived of the cell phone after comic strip creator, Chester Gould introduced Dick Tracy's 2-way wrist radio in 1946? A path from nowhere in human consciousness to a figment of someone’s imagination in a cartoon (1946), then opening a mind to possibilities (1964), a concept and prototype (1973), and a product (1983). The Digital phone (1990), just thirty-five years ago. You know the rest

Intelligence

Let’s talk about intelligence for a minute. I frame human intelligence in several ways. One is that data can lead to information, sometimes to knowledge, and occasionally to wisdom. Another is how I think about health: Physical, Mental, and Spiritual Health. So, perhaps for Intelligence, Physical intelligence is clinical information about the body, Mental intelligence is feelings, and Spiritual intelligence is faith and ethics. So far, Wisdom, Feelings, Faith, and Ethics seem uniquely human.

Is AI Understandable?

Recently, I visited Eric Pinaud, my dear friend and go-to info tech translator. I needed help paddling through the AI soup. I can confidently discuss my AI experiments, hopes, desires, fears, and outrage. But I couldn't answer, "What the heck is AI, anyway?"

While I understood Eric while we were talking, I found no retrievable home for this new knowledge anywhere in my neural network a month later during podcast production. Hear what I did there. I’m sounding more confident than I am, just like the voice of AI. Question and verify everything.

I will interrupt our recorded conversation from time to time to ask questions and report on answers I find from Eric or Claude. Claude isn’t another person in my network. Claude 3.5 Sonnet is an AI assistant computer program designed to interact with humans and help them through natural conversation. Think of it as software that can understand what you write and respond helpfully, like conversing with a knowledgeable person like Eric. Except Claude never sleeps and doesn’t play the harmonica.

What is AI?

Eric Pinaud: The question of the year or the past few years. Because, in part, these Gen AI tools are available to everybody. As opposed to in the past, technology was only accessible by programmers or techies or whatever else. Gen AI came about as a chatbot, and anybody who can write or listen can use it. And so they can use them better with some understanding of what it does well and not well. And so forth. So, we are going to talk about generative AI, and we're going to start in the context of just a background of AI. In general, where have we been with AI? [Just a high-level overview of where we are today and what may be next. But some things are not here, and nobody knows exactly how they work, which is pretty crazy.

Many people may not consciously realize that AI has been around for a long time. It really started in the fifties, with mathematicians and computer scientists developing algorithms and so forth.

Health Hats: The first notable AI development in the 1950s was Arthur Samuel’s checkers program in 1952, which could learn and play the game independently. Another significant milestone was the Logic Theorist, developed in 1955 by Allen Newell and Herbert Simon, which could mimic human problem-solving skills.

Narrow AI – One prediction, one decision

Until about ten years ago, it was called the Era of Narrow AI.

Health Hats: 2010 to 2015.

Eric Pinaud: Yeah. Narrow AI refers to AI systems that can do something but are very narrow and specific. And you can only ask them to do something else if it's language-based. It's all code-based, and it's AI. So, artificial intelligence is based on data analysis; AI makes predictions. All AI works like that to various degrees. You give it data. That's the input. And the output is a prediction.

A basic example is the Netflix queue. The input is the stuff that I've watched. The output is a recommendation. However, intelligence in Netflix can only do that. It's very narrow. At least until now, you can't just talk to Netflix and say, Hey, I want to do this or that. They haven't quite plugged that in yet. Maybe they will. I don't know. But basically, the recommendation, Netflix, Spotify, and all those kinds of things are very narrow artificial intelligence. It does one thing based on these parameters that you give it. And then it gives you a prediction.

Broad AI – Natural Language

Eric Pinaud: Today, we're in the age that they call Broad AI. So, things like Generative AI can do a little more. Generative AI, obviously, you can talk to it. It knows about a whole bunch of things, and you can ask it about pretty much anything, really. And you'll get an answer. Sometimes, it's a good answer, sometimes not so good.

AGI, Artificial General Intelligence – Creating Something New

Eric Pinaud: The future is what they call AGI, artificial general intelligence. And so, AGI is the holy grail, right? It essentially mimics the human brain's ability to take a whole bunch of information from a whole bunch of different places and apply those connections to something new that you've never seen before. People can do that. Machines today cannot do that. Even Gen AI, even the latest, greatest models today, cannot do that. They cannot infer information that they know from other things to a new problem and apply that.

The holy grail is artificial general intelligence, which a lot of people are afraid of because, at that point, it might be better and faster than humans and could have some consequences that nobody really knows about.

Some people say that AGI might be here in the next five years. Some people say it's going to take 30 years. Some people say we're never going to get there. Nobody knows.

AI Examples

Eric Pinaud: We already talked about Narrow AI: Pandora and Netflix. Cruise control, I think, is a good one because everybody knows, oh, yeah. Many people know what cruise control is, and it used to be that cruise control; you would just press the button, and it would go at that speed. And at that point, it was not artificial intelligence because, at that point, all it did was lock a speed, and if the car in front of you slowed down and you didn't brake, you'd crash right into it. Today's adaptive cruise control has sensors in the car that take in a bunch of data from the car's speed in front of you and then adapt. It predicts as to how fast or how slow you need to go. So, it's broadened its scope. It is a much broader adaptation of that, but still artificial intelligence, not generative. It doesn't create anything. Okay. Yeah. It just takes in some data, makes a prediction, and then applies it to the car going faster or slower.

Face ID

Health Hats: What about face ID? Is that narrow?

Eric Pinaud: Yes, face ID is narrow because it is a very narrow application of data points on a photo, and the answer is yes or no. That's all it does....

Reflecting on community & self-care post-election. MS teaches patience. Adjusting media habits, finding strength in family history, music, & trusted connections.

Summary

Health Hats muses about physical, mental, and spiritual health, community connections, and self-care during these post-election times. He has changed his media consumption habits and is learning from his experiences with multiple sclerosis. He expresses anxiety and a dark curiosity about the future, drawing strength from family history, marriage, and music, and emphasizes the importance of staying connected with trusted communities and being open to help when needed.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digital marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast

Inspired by and Grateful to

Steve and Sue Heatherington, Heidi Frei, Matt Neil, Tania Marien, Ann Boland, Leon van Leeuwen

Links and references

Heather Cox Richardson's Letters from an American on Substack

Weekly Show with Jon Stewart

Kareem Abdul-Jabbar on Substack

Virginia Heffernan's Magic+Loss on Substack

the Bulwark

Katelyn Jetelina's Your Local Epidemiologist on Substack

Lyz's Men Yell at Me on Substack

the Guardian

Sue Heatherington's fresh sight from the quiet edge.

Episode

Let’s review the body from head to toe: tedious brain loop, dry, sticky mouth, queasy stomach, tight muscles, loose bowels, and bone fatigue. Fear, anxiety, despair, and hopelessness, with a niggling curiosity.

I'm networking and reaching out to loved ones in person and virtually. Searching for facts, trust, and people to follow. I've stopped almost all pundits in print, audio, and video. My feeds are changing with more music, comedy, animals, and sports. And algebra—why algebra?

I'm sticking with following Heather Cox Richardson, Jon Stewart, Kareem Abdul-Jabbar, Virginia Heffernan, the Bulwark, Your Local Epidemiologist, Men Yell at Me, the Guardian, and Sue Heatherington's fresh sight from the quiet edge.

I've added AOC, Jeff Jackson, and Isaac Saul's Tangle.

More music: My Latin Band, Lechuga Fresca, is on hiatus, so I joined a Dixieland Band.

I'm still losing weight—30 pounds so far. I just noticed less abdominal flab to pinch when taking my shots. I can do 20 push-ups and 16 squats and can get myself up off the floor. I walk about 3,500 steps a day. I'm getting a new travel wheelchair.

I have several priorities: don't fall, progress with MS as slowly as possible, maintain much of my pathological optimism, continue to play my horn, and contribute to inclusive, nurturing communities. The hardest priority may be maintaining optimism.

MS has forced me to exercise my patience muscles. What choice do I have? I can't run to the bus. If I miss it, I miss it. What muscles will we strengthen over the next four years? I'm a terrible crystal ball gazer, but I know the self-care muscles will need attention. At this moment, I don't feel the urge to do much of anything except take care of myself and those with whom I'm fortunate enough to share an existence. When a plan comes to me, I'll share it. If someone else comes up with a plan, I'll check out the someone and the plan with others I trust. If it makes sense and feels possible for me, I'll act and maybe even join.

I'm already connected to many extraordinary, trusted communities nationally, internationally, and locally, and I'll stay connected. However, my priorities, my communities, and the tint of my lenses will likely change.

My comfort will be challenged. I'm very nervous about that. I am so privileged. These muscles will need a strengthening program.

I'm grateful that during our 50 years together, my wife and I built a house, had a kid at home, cared for dying family, home-schooled, and changed locations and careers several times. Our sons are fine dads, married to strong partners, and live nearby.

We could do the unthinkable.  We still can. Those muscles are strong. My Opa survived the Bergen-Belsen concentration camp, and my mother and her parents survived hiding for almost five years. People saved them. I'm grateful for that, too.

So, let's see what happens. Our paths will unfold.  You know where to find me. Comment. Keep in touch. Take care of you and yours. Open yourself to help when you need it. Help can come out of the woodwork.

Related episodes from Health Hats

https://health-hats.com/pod171/

https://health-hats.com/pod219/

https://health-hats.com/pod181/

Artificial Intelligence in Podcast Production

Health Hats, the Podcast, utilizes AI tools for production tasks such as editing, transcription, and content suggestions. While AI assists with various aspects, including image creation, most AI suggestions are modified. All creative decisions remain my own, with AI sources referenced as usual. Questions are welcome.

Creative Commons Licensing

CC BY-NC-SA

This license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format for noncommercial purposes only, and only so long as attribution is given to the creator. If you remix, adapt, or build upon the material, you must license the modified material under identical terms. CC BY-NC-SA includes the following elements:

   BY: credit must be given to the creator.   NC: Only noncommercial uses of the work are permitted.

   SA: Adaptations must be shared under the same terms.

Please let me know. [email protected]. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

What kind of Artificial Intelligence does Health Hats, the Podcast, use in production? Understanding types of AI, transparency, and ethical considerations.

Summary

Perplexity used in this summary

AI Tools in Use

Various AI-powered software and apps are utilized in production, including Zoom, Descript, Grammarly, DaVinci Resolve, Canva, Perplexity, and OpenArt AI.

Types of AI

The episode breaks down different categories of AI, including Narrow AI, Artificial General Intelligence (AGI), and Artificial Superintelligence (ASI).

AI functionalities are explained, from Reactive Machine AI to the theoretical Self-Aware AI.

Ethical Considerations

Transparency and disclosure of AI usage in content creation

Maintaining authenticity and human creativity

Ensuring content accuracy and preventing misinformation

Addressing bias and fairness in AI algorithms

Protecting user privacy and data

Ensuring Transparency

Disclosing AI usage in audio content and metadata

Clear communication with the audience about AI utilization

Appropriate use of AI as a tool to enhance, not replace, human creativity

Verifying and fact-checking AI-generated content

The episode emphasizes the importance of using AI responsibly to enhance the podcasting experience while maintaining integrity, authenticity, and trust with the audience.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digital marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to 

Amy Price, Fred Trotter, Dave deBronkart, Eric Pinaud, Emily Hadley, Laura Marcial, James Cummings, Ken Goodman

Links and references

https://conversational-leadership.net/quotation/ai-is-neither-artificial-not-intelligent/

AI in Podcasting: Transforming Podcast with AI Technology

Best AI tools for podcasts

AI in Podcasting: A Guide for Brand Marketers

https://www.carmatec.com/blog/ai-in-media-and-entertainment-complete-guide/

AI in Media and Entertainment Complete Guide

Episode

Proem

No surprise, I use Artificial Intelligence in my podcast production. As an early adopter of technology, I explore ways of using Artificial Intelligence (AI) tools during my podcast production. As a technology skeptic, I’m alert to ethics, dangers, and risks. I’m uncomfortable with the term Artificial Intelligence. It’s not artificial or intelligent. Wait, I heard that somewhere? Where? I asked Perplexity, my most common AI tool. Someone said that AI is neither artificial nor intelligent. What was really said?

[Side note: I converse with AI, ask questions, pose another question, and clarify, just like talking with my grandkids about Pokémon, video games, or politics. Also, note that in AI-speak, questions are called prompts, and answers are referred to as output or answers.]

Perplexity answered:

The statement "AI is neither artificial nor intelligent" was made by Kate Crawford, a prominent researcher and author in AI ethics and policy. Here's a breakdown of what she really said and meant:

Not Artificial: Crawford argues that AI is not truly artificial because it is "made from natural resources, fuel, human labor, infrastructures, logistics, histories, and classifications" https://conversational-leadership.net/quotation/ai-is-neither-artificial-not-intelligent/

She emphasizes that AI systems are grounded in the physical world and rely on very real and tangible resources and human input.

Not Intelligent: Crawford contends that AI systems are "not autonomous, rational, or able to discern anything without extensive, computationally intensive training with large datasets or predefined rules and rewards.” This challenges the notion of AI as an independent, thinking entity.

Embodied and Material: Instead of being artificial or intelligent in the way we often imagine, Crawford describes AI as "both embodied and material."

[A brief aside: The AI tool, Grammarly, doesn’t know when something is a direct quote, so it suggests edits. I trash those suggestions. This showcases human control of AI in its simplest form. Grammarly’s plagiarism check function appropriately noted when I quoted myself and quoted others in Perplexity.]

In the interest of transparency, this episode shares my thoughts on and use of AI in podcast production.

AI used in Health Hats Production

A partial list of software and apps that include AI functions I use in production includes Zoom, Descript, Grammarly, DaVinci Resolve, Canva, Perplexity, OpenArt AI, Squadcast, Audacity, DALL.E, Auphonic, and more.

AI in Podcast Production According to Health Hats

What does artificial intelligence even mean? I need to break down the tool to better understand it. AI can involve functions like searching, content creation, editing, or summarizing. Sophistication or capabilities could refer to a level of understanding, such as completing specific tasks, acting as a virtual assistant, solving problems, discerning patterns, or learning beyond itself. We could also consider AI in terms of ownership, agency, business models, or trust. Yikes, that’s as far as I can go.

So, I prompted Perplexity: I'm trying to tell my followers how I use AI in podcast and video production. How should I categorize types of AI?

With references, Perplexity answered:

When discussing how you use AI in podcast and video production, it's helpful to categorize the types of AI tools based on their primary functions. Here's a suggested framework for categorizing AI tools in media production:

AI in Content Creation and Editing

Audio Processing

AI tools in this category can significantly enhance the quality and efficiency of your podcast production:

Noise Reduction: AI algorithms can automatically remove background noise, improving audio clarity. 1

Voice Enhancement: Tools like Adobe Podcast can enhance voice quality, making recordings sound more professional. 2

Automated Editing: AI can identify and remove filler words, pauses, and other unwanted audio elements. 4

Video Editing

For video podcasts or related content, AI can streamline the editing process:

Automated Cuts: AI can suggest or implement edits based on content and pacing. 2

Visual Effects: AI-driven tools can apply effects or adjust visual elements like lighting and color balance. 6

Content Summarization: AI can generate highlight reels or short clips for social media promotion. 4

AI for Content Enhancement

Transcription and Subtitling

These tools improve accessibility and repurposing of your content:

Automated Transcription: AI can quickly convert audio to text, saving hours of manual work. 3

Multi-language Subtitles: AI-powered translation can help reach a global audience. 4

Content Generation

AI can assist in various aspects of content creation:

Script Writing: AI tools can help generate ideas, outlines, or even full scripts for episodes. 1

Show Notes: Automatically generate detailed show notes from your audio or transcript. 3

SEO Optimization: AI can suggest keywords and optimize content for better discoverability. 4

AI for Audience Engagement and Analytics

Personalization

Enhance listener experience with AI-driven personalization:

Content Recommendations: AI can suggest relevant episodes to listeners based on their preferences. 6

Dynamic Ad Insertion: Personalized ad placement based on listener data and content context. 4

Analytics and Insights

Leverage AI to understand and grow your audience:

Audience Analysis: AI can provide insights into listener behavior and preferences. 6

Performance Prediction: Some tools can predict the potential success of content before publication. 6

By categorizing AI tools in this way, you can clearly communicate to your followers how AI enhances different aspects of your podcast and video production process, from content creation and editing to audience engagement and analytics.

I haven’t used this function yet.

Types of AI Based on Capabilities

Then I prompted Perplexity again:

AI is such a general term. What are the various types of AI? How do they differ?

Artificial Intelligence (AI) can indeed be categorized in various ways. Here's an overview of the main types of AI based on their capabilities and functionalities:

Narrow AI (Weak AI)

Narrow AI is designed to perform specific tasks within a limited context. 1 2

It's the most common type of AI currently in use. Examples include:

Virtual assistants like Siri or Alexa

Image recognition software

Recommendation engines (e.g., Netflix, Amazon)

While highly efficient at specific tasks, Narrow AI lacks the ability to function beyond its predefined scope. 3

Artificial General Intelligence (AGI)

AGI, also known as Strong AI, refers to AI systems that would theoretically equal or exceed human intelligence. 1 2

AGI would be capable of:

Learning and reasoning like humans

Solving problems across various domains

Adapting to new situations

AGI remains a theoretical concept and has not yet been achieved. 3

Artificial Superintelligence (ASI)

ASI is a hypothetical form of AI that would surpass human intelligen

Effective solutions & ethical guardrails for data-driven decision-making, care, & treatment require patient involvement in policy & technology development.

Summary

Patient Insights on Health Access, Technology, and Public Policy 

Data should inform decision-making for a triad of patients, caregivers, and clinician partners.

Some patients desire data sovereignty - the ability to access, use, and share their health data.

However, managing personal health data can be overwhelming for individuals.

Transparency about data usage and privacy is crucial for building trust.

There are concerns about potential stigma and discrimination from data misuse.

Including patients in policy and technology development can lead to more effective solutions.

Ethical guardrails are needed, particularly for data aggregation and monetization by companies.

There's a mix of optimism and pessimism about the future of health data management.

Collaboration with patients in development processes can increase the likelihood of successful outcomes.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digital marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to 

Kistein Monkhouse, Claire Sachs, Christine Von Raesfeld, Geri Lynn Baumblatt, Aaron Carroll, Erin Holve, Adam Thompson, Kathleen Noonan, Andrea Downing

Links and references

The Panel

Kistein Monkhouse, the moderator, founded Patient Orators. My peeps are Christine Von Raesfeld, founder of People with Empathy and with the Light Collective, and Claire Sachs, founder of the Patient Advocate Chronicles and TPAC Consulting.

A federated data model for patient data

PCORnet is a prime example of a federated data system. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8596061/

Episode

Proem

Kistein Monkhouse invited me to participate in a 30-minute panel at September’s Academy Health’s Datapalooza conference titled ‘Patient Insights on Health Access, Technology, and Public Policy.’ I thought, ‘OMG, this thesis-worthy topic can’t be addressed in 30 minutes.’ However, the opportunity begged to be embraced, especially with the citizen expert panel members: Kistein Monkhouse, the moderator, founded Patient Orators. My peeps are Christine Von Raesfeld, founder of People with Empathy and with the Light Collective, and Claire Sachs, founder of the Patient Advocate Chronicles and TPAC Consulting. We had a blast preparing and presenting. Here goes. For readers, this newsletter was edited for readability.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Level set – Get Your Patient On

Kistein Monkhouse: Danny, as it relates to patients, their care partners, and clinicians, where do you see data playing a role in improving health access?

Danny van Leeuwen/Health Hats: I want to do some level setting. We're here about data. The fuller picture is that data leads to information, knowledge, and understanding, and then Lord helps us gain wisdom.

Next, imagine yourself as a patient, whether you are a partner, a parent, a child, a neighbor, a relative, or a navigator. Let’s give the umbrella name to those support people: caregivers.

When I query people who care as part of every week, locally or remotely, I talk to them about the tools they use or need. Here's what they say:

They use lists and spreadsheets first and foremost. They use calendars, phones, the internet, and portals. They rarely use apps. An exceedingly small proportion of people use apps and rarely use them for more than a month.

People use tools to manage projects - people call that life. But what are they managing? They're managing medications and team members, whether those are medical people or support people. They manage tasks, appointments, records, learning, sharing, and coordinating. So, after assisting with activities of daily living, most of their effort is spent managing time. Managing time, people, records, behavior, and tasks in no particular order, they would love to make any administrative tax tasks more accessible. Still, once they find a practice that works, whether it works for you or me, they're reluctant to change those methods. Don't mess with what works unless it's easy to learn and fits their current pattern.

They describe project management (my words) as disruption occurring every week, if not every day. So, I propose that data geek clinicians, academics, and policy people here create a use case. I propose you create a use case for anything you're working on. That is a use case in which you have lived or know somebody who's living, and if you can't, for sure, someone intimately who can self-reflect.

Learn more about that scenario, and then invite people with lived experience as patients or caregivers to join your team as full-time members.

Kistein Monkhouse: Thank you, Danny. It sounds like a concise summary; invite people with lived experience to the table to have these discussions. Correct?

90% Similar, 100% Human

Claire, is data playing the role it should be, and if not, what's missing?

Claire Sachs: Data does play a vital role in healthcare, especially as we move forward. But healthcare is not a one-size-fits-all operation. I have over a dozen conditions, and if you had my clone right next to me, the solutions and outcomes they seek could be diametrically opposite from what I'm seeking.

I would love to see what I think needs to be added, partially because it's not seen as legitimate or because people are a little afraid of attempting it, as it is a qualitative piece. People fail to realize that patients have more in common if you step away from the disease itself, much more in common than you think.

So, there are ways to incorporate qualitative data. I can think back to one experience I had with building ontological systems, where you use data dictionaries to ensure that a common language is understood. But you go to a higher level in the data umbrella. In that case, you can not necessarily code but categorize qualitative answers to create a space for flexibility when talking about tailoring outcomes.

I would summarize to patients who deal with complex conditions by saying to keep the qualitative data in mind. It really can serve a purpose. And if you're talking about meeting patients where they are, you can't do that with just what you must incorporate, such as why.

Kistein Monkhouse: Thank you, Claire. I appreciate that. Christine, we're going to move right along to you.

Inspiration from Data: Weak Link in our Health

Can patients use data to its full potential to improve their quality of life? If not, what's missing?

Christine Von Raesfeld: I hope patients can use data to its full potential. However, I'm finding that that doesn't always work.

One of the things that I think about when we think about data is how we empower patients and look at this differently. If I were a patient with access and agency over my raw data, I could look for researchers doing work related to what I'm looking for.

As a patient, I have multiple conditions, rare and undiagnosed: Cardiac, all these things. But when we look at the data and how we handle that data, I participate in a lot of research and studies where the information never comes back to me and never comes back from my care.

So, how do we look at data? We should develop a new idea of research and encourage a citizen science approach. When we consider rare diseases or any disease, most people would be willing to share their data for the right reasons and the right incentives. Our industry needs to have more aligned incentives.

I tell many patients that when you look at the data, in many of these companies, all they want is data. How do we then renegotiate and build a space where we can share that information, share it, and still progress?

I'm still reviewing my case. I'm collecting data and gathering it, trying to find people to work with, but getting it takes work. So, how do we make this accessible for everybody?

Kistein Monkhouse: Good points. Danny, I'm going to come to you. We just heard Christine speak of data autonomy. What are your thoughts on policies needed for data usage to benefit patients, their care partners, and clinicians?

Relationship Triad for Decision-Making: Patient, Caregiver, Clinician Partner

Danny van Leeuwen/Health Hats: When I think about policies, first, I don't think about patients because there's a vital triad. There's the triad of a person, a caregiver, as I defined it earlier, and then their clinician partner. We often think about not one stakeholder but the decision-making triad in our work and policy. All this is for that triad to make sensible decisions that meet their preferences. I haven't seen that approach with policy, and I need wisdom about implementing it. I don't know,...

Philip Shadle, CEO, Aimee Copeland Foundation opens outdoor accessibility for disabled individuals with all-terrain wheelchairs. My endorphins flow. Yeehaw!

Summary

This podcast episode features an interview with Philip Shadle, CEO of the Aimee Copeland Foundation, discussing the transformative impact of all-terrain wheelchairs on accessibility and outdoor experiences for individuals with disabilities.

The podcast underscores the importance of accessibility and inclusion in outdoor activities, celebrating the collaborative efforts of organizations, individuals, and communities to enhance the lives of people with disabilities.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digital marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to 

Ann Boland, Bruce Kimmel, Olivia Zivney, Linda DeRosa, and all my many helpers

Links and references

Camino de Santiago pilgrimages,

Costa Rica

Aimee Copeland Foundation

Action Track Chair in different sizes.

Episode

Proem

According to the CDC

A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).

Clearly, it's not a legal definition. I would add self-image, societal perceptions, and environment as components of that definition. Some days, I feel more disabled than other days, and some situations enhance or reduce my abilities. Ability/Disability is a continuum that changes over time and situation. Travel accentuates my abilities - puts them in high relief - for me. Travel requires close examination of my abilities so I can figure out how to manage minute-to-minute - constant decision-making. Travel allows me to stretch my capabilities. It’s exhilarating and eventually exhausting. Periodically, I share my travel experiences. Remember the two Camino de Santiago pilgrimages, one in 2019 and the other 2022? In 2023 we explored Costa Rica.  We’re planning a music trip to Cuba in four months. Today, I describe our trip to Cloudland Canyon State Park in northwest Georgia.

After a zip-lining accident in 2012, when she was 24, Aimee Copeland was hospitalized and diagnosed with a flesh-eating, bacterial infection. They had to amputate both of her hands, right foot, and entire left leg. Before the infection, she was extremely active, rock climbing, backpacking, and trail running. In response to her frustration with wheelchair life, she created the Aimee Copeland Foundation, which raises funds to create opportunities for connecting with the self, the community, and the earth through the provision of a fleet of all-terrain wheelchairs for free use by people with disabilities within select Georgia state parks.  In this podcast episode, we interview Philip Shadle, CEO of the Aimee Copeland Foundation. You can find videos of me motoring in an all-terrain wheelchair on my YouTube channel—links in the show notes.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Off-road wheelchair travel

Health Hats: Philip, thank you for taking a few minutes to tell me about yourself and the Aimee Copeland Foundation. I am a person with disabilities. I've got all my limbs and use two-forearm crutches and an electric wheelchair. I can walk. My balance pretty much sucks. I like to travel. My wife and I have friends we travel with. When one of our fellow travelers looked up disability travel, they found the Aimee Copeland Foundation. We went to the Cloudland Canyon State Park and used their all-terrain wheelchair. It was awesome, just awesome. I have a foldable electric wheelchair that does maybe a 12% grade and, at top speed, might go four miles an hour. And I do some pretty rough stuff with it, but I can tip over.

Anyway, I just want to tell you the thrill I experienced with the all-terrain wheelchair. The process was easy: take the online safety training, get a certification, and reserve the all-terrain wheelchair. Everybody was so lovely in the park, and I did two miles in two hours, which was enough. I'm glad I was strapped in.

Philip Shadle: Yes, you must get used to the chair's operation. The ride can be a little bit rough for first-time users. Like anything, the more experienced, the better you get at handling the trails.

Health Hats: I'm comfortable on trails because I've done it with my chair, and I'm very comfortable with a joystick. I had scouts to help me., I went to the website and looked at Ms. Copeland's biography and story, and it's awe-inspiring. Tell us a little bit about yourself.

Introducing Philip Shadle

Philip Shadle: I became a dealer for Action Track Chair in 2011. When I started, I realized this is something unique, allowing people who might not otherwise have an avenue to get outside and do things to get off the boardwalks and the pavement and get in touch with the earth. As a dealer, I saw how they helped people physically and mentally be outdoors and go places other people go. Just to be included, one of the things that stuck out in my mind in the early years was when I sold a track chair to the parents of a little boy who was 11 at the time. The most significant thing he wanted to do was play in the creek with the other kids, and he wanted to know if the track chair could go in the water. And I said, it absolutely can go in that water. It was only maybe six inches in a little creek. So, on the first day, I brought a demo chair down to him. He put it in the creek with the other kids, which changed his life. There was no other way, no other wheelchair. He could go down the embankment and into the creek with the kids. I realized then it was something special.

Travel in Costa Rica

Health Hats: We found a travel agent in Costa Rica that specializes in people with disabilities and offered the services of a guide. We went for a week. He drove and set up everything. He was the grandfather of disability travel in Costa Rica. What an enjoyable experience, especially since he took me on some capability-stretching experiences. He took me in my chair on a 10th-of-a-mile-long suspension bridge six inches wider than my chair on each side and 20 stories over the canopy, swaying 18 inches when you hit the middle. I'm scared of heights. I was ready to pee my pants the whole time, but once I got over it, it was like, oh man, I did that. I did that. See my travel videos here.

Foundation Business Model

Health Hats: How do you fund your work? Those chairs, maintenance, and services can't be cheap.

Philip Shadle: Fortunately, the maintenance is next to nothing. They're very easy to maintain. There's not a lot of parts that go bad on the chairs. So, we launched the program a little over two years ago, and we've only had to repair some of the attendant controls. A cable that allows an attendant to drive the chair can get pinched in the track, and we must replace them. But other than that, the chairs, the maintenance, and the function is easy. We are 100% funded by donations and grants. We reach out to the public. We asked for corporate grants for individual donations and everything in between to help do that.

Health Hats: Good. I just sent a hundred bucks and subscribed to the blog.

Philip Shadle: Thank you.

Health Hats: Oh, it's worth it. I would've paid to use the all-terrain wheelchair. I couldn't believe the Park didn’t charge me.

Philip Shadle: In today's world, everything costs.

All-Terrain Wheelchair Models

Health Hats: Did the 11-year-old kid get the same wheelchair I used, or was it smaller because he was a kid?

Philip Shadle: It was smaller. We have different sizes. It was the exact model you sat in, but the one you rode was 24 inches wide between the arms, and his was only 16 inches. The chair his parents got for him was a little too big. But they went with it because of the longevity of the chair. They wanted him to be able to grow and adapt and not grow out of it. So that's one. And now we have different models that have expanding arms. I've retired from Action Track Chair, but they have models that expand. So, it has the same base, but the arms go in and out to accommodate growth.

Health Hats: I saw the new model on Instagram or TikTok. Aimee was in a new pink one, and she was thrilled. It was so much lighter.

Philip Shadle: Yes. They have a new model called The Axis, which is an adjustable model. To use that can go with growth or change the arm widths in and out.

 Call to action

I now have one URL for all things Health Hats. https://linktr.ee/healthhats. You can subscribe for free or make a contribution through Patreon. You can access show notes, search the 600-plus episode archive, and link to my social media channels. Your engagement by listening, sharing, liking,...

Aaron Carroll, CEO of Academy Health, discusses his journey to improve health systems & decision making through community engagement & repetitive communication.

Summary

Aaron Carroll, CEO of Academy Health, shares his journey, from his frustrations with the healthcare system as a pediatrician, and the role of mentorship and science communication in his career. He delves into his efforts to make complex health issues understandable to diverse audiences through various media, his role in improving health care decision making and systems, involving communities in research, and building trust through consistent and repetitive science communication. Dr. Carroll also touches on the importance of implementation science and the challenges of making research findings effective in real-world settings.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digital marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to 

Seth Godin, Nakela Cook, Ann Boland, Ellen Schultz, Steve Heatherington

Links and references

Aaron Carrol: The Incidental Economist, Healthcare Triage, Robert Wood Johnson Clinical Scholar, New York Times, Indiana University's COVID response.

Academy Health: Academyhealth.org/Datapalooza, Communicating for Impact, community-led research grants, Health Data Leadership Institute, Dissemination Implementation Science Conference

patient-included criteria

implementation science

Episode

Proem

Danny and Ann, July 3, 2024

Together for more than fifty years, my wife and I still practice communication - practice as in repetition, experimentation, and humility with two steps forward and one step back (or one forward and two back). No wonder anyone participating in healthcare continually struggles with the puzzle of communication. Just today, I texted a pharmacy about access to a critical medication with an expired prescription, tried to explain my newly diagnosed diabetes and diet choices on FaceTime with a friend, and drafted a letter about lessons learned about measurement for team members to share with our leaders. I know some master communicators: Seth Godin, Nakela Cook, my wife, Ellen Schultz, Steve Heatherington, and my guest today, Dr. Aaron Carroll, President and CEO of Academy Health. They each excel in different ways under different circumstances. I must take care to keep listening to their content and not float above and marvel at their artistry and skill.

DALL·E 2024-07-24 09.19.39 - A scene depicting various master communicators, each in their element. One is a charismatic speaker on a stage, engaging an audience

I’m delighted to have the opportunity to spend some time with Aaron Carroll and tap into the communication challenges he faces as a communicator and leader. I’ve followed him for years on his blog, The Incidental Economist, and YouTube channel, Healthcare Triage. Dr. Carroll can, has, and will impact your health.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Introducing Aaron Carroll

Health Hats: Aaron, thanks for joining me. I appreciate it. I've been following you for a long time.

Aaron Carroll:  Sure. That’s great.

Health Hats: I love your work. You're inspiring and make complex issues understandable and entertaining. I know how challenging that is. I’m trying to connect with younger audiences since I'm an old fart and on the way out. People in advocacy and activism are younger. They don't hang out where I hang out. I'm experimenting with hanging out in different places. That means shorter, more complicated segments, especially since I've added video. Although I’m mostly a one-person shop, I have people who help me, but it’s still tough. My grandkids, 16 and 13, help and advise me. It's humbling. Anyway, I admire what you've done, and I've been following you for a long time. I'm a little nervous that you will communicate less in your new job as CEO of Academy Health.

Aaron Carroll:  You're very kind. I appreciate it.

Health is Fragile

Health Hats: When did you first realize health was fragile?

Aaron Carroll:  My dad was a trauma surgeon on top of his other jobs. He was also a thoracic and general surgeon. From a young age, I knew terrible things could happen to people. Even with the sort of medicine being as advanced as it was, things could go wrong. I heard him talk about patients, what happened to them, and how hard it would sometimes be to improve their health, which certainly hit me.

And then there's a fair amount of chronic disease in my family as well. Recognizing that even people who appeared healthy and you might not know were suffering from some chronic condition. It happens all the time. So many Americans have chronic conditions or things that go wrong with them. It happened to me, my siblings, my parents, and others. It became more apparent as I got older and went to medical school.

Writing a Prescription Isn’t Enough

Health Hats: Why don't you tell us about yourself and your journey from Indiana University to the Academy?

Aaron Carroll:  I was raised in a medically focused family, and from a young age, I always thought I wanted to be a physician. And so, even if you asked me about grade school, but indeed high school and into college, I wanted to go to medical school. I got to medical school, and everything was fine. I became a pediatrician and went off to residency. I was very frustrated and so severely that I thought about leaving the profession. I thought I'd finish residency, but I was in Seattle. I'm going to work for Microsoft or something like that. I was mainly frustrated at the healthcare system and how hard it was to get my patients what they needed. I'd spent four years training on how to take care of all kinds of stuff, but you can write a prescription. If the family doesn't have good health insurance, they can't afford to fill it. Even if they have health insurance, perhaps they need help to afford the deductible or the copay. Maybe they need a car to get to the pharmacy. I could talk about everything a child needed. They often needed their parents to have a job, food security, or somewhere stable. It was incredibly frustrating.

Fix it

Luckily, a couple of mentors told me I could make a career out of trying to fix the healthcare system. Sign me up for that. It sounds great. So, I stuck around Seattle for a couple extra years and became a Robert Wood Johnson Clinical Scholar. I got a master's in health services from the University of Washington School of Public Health. I graduated and attended Indiana University (IU) as a newly minted health services researcher.

Phase one: Independent Investigator

I think of my career at IU as having about four stages. Uh, in stage one, I was a very traditional independent investigator. I did a lot of work in clinical decision support. How can we take data and evidence over here and give it to clinicians at the point of care where they need it so they can practice more evidence-based and guideline-based medicine? I did much work in medical decision-making and utility assessment to determine the most cost-effective or helpful way to practice through patients' eyes. How do we bring data and evidence to patients, policy, and healthcare? I also did some policy work. How do we figure out how the Affordable Care Act will work?

Phase Next: Mentor, Communicator, Responder

Then, in phase two, I became interested in mentorship. I realized there's only so much work you can do yourself. Things require teams. I convinced my chair and the whole school to develop programs to better mentor researchers in their careers. How do we take data and evidence and bring it to the practice of research so that we can do a better job in training?

But then I realized in phase three, we need to be talking to the public. It's not enough for us to keep talking to each other. I got really into science communication. I started a blog (The Incidental Economist) in the late 2000s. It was the golden age of blogging. Everybody seemed to have a blog, and ours focused on how we bring data and evidence to healthcare reform discussions. It was when the Affordable Care Act was being debated and finally passed. That grew an audience. Eventually, I started consistently writing for mainstream media, for the New York Times, for seven or eight years. I started a YouTube show (Healthcare Triage), which is all about how we take data and evidence and bring it to the public for better discussions about health, health research, health policy, and healthcare.

After phase four, the pandemic hit, I got pulled into helping run Indiana University's covid response. Indiana University has 110,000 or so people. It was like running a medium-sized town. We built labs. We set up public health infrastructure. We did contact tracing and isolation all around.  How do we bring data and evidence to sort public health into answer

Family and friends dispersed Mighty Casey (Mary) Quinlan’s ashes in the Gulfstream, reflecting on her life and sharing outrageous and mundane pics and stories.

Summary

On May 24, 2024, Mighty Casey Quinlan's ashes were spread in the Gulfstream of the Atlantic Ocean near Stuart, Florida. This episode captures the layers of that experience, featuring an introduction conversation between Jan Oldenburg and Health Hats, recorded on June 27. The episode includes self-introductions of the dispersal party, a historical photo tour of Casey's life, and a reflection from Hank Burchard. The package of audiovisual pieces including a 17-minute video with introductions and a three-minute photo tour by Casey’s sister, CeCe can be found in the show notes. Coming soon, Casey's website, mightycasey.com, will include all her podcasts and the contents of six VHS and one Beta tape recorded over the years. Check our progress.

These show notes DO NOT include images. 

Images are key to this episode. Click here to view the printable newsletter with images. 

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to 

Jan Oldenburg, CeCe Casey, Michael Casey, Myrna Isaacs, Piper Dankworth,

Laurie Rodgers Stukel, Hank Burchard, Dave DeBronkhart, Amy Price

Links and references

Casey's Website

Health Hats Podcasts with and about Casey 

Credits

Music behind photos scraped from YoYo Ma on Fresh Air

Images of Casey throught taken by family and friends over the years

Episode

This transcript DOES NOT include images. 

Images are key to this episode. Click here to view the printable newsletter with images.

Proem

Health Hats: On May 24th, 2024, we spread Casey’s ashes in the Gulfstream of the Atlantic Ocean near Stuart, Florida. This episode layers several of the many pieces of that experience. I stopped here because I’d had enough. Time to publish! You’ll find an intro conversation between Jan Oldenburg and me recorded on June 27th, followed by self-introductions of the dispersal party, recorded by our guide, Karen Hallett. Next, we’ll take a historical photo tour of Casey’s life, piloted by Casey’s sister, CeCe. I only included about fifteen of the almost one hundred photos, as the resulting three-minute clip took almost twenty hours to produce. We’ll end with me reading Hank Burchard’s post-event reflection, and then Jan and I will wrap it up. The written and audio include everything except the videos, of course. I will create a 17-minute video with the introductions and a three-minute one with the photo tour. I’m resurrecting Casey’s website to include all her podcasts and the contents of six VHS and one Beta tape Casey recorded over the years. The URL will be Casey’s https://mightycasey.com. Try it to see if we’ve got it ready.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.a

There’s Something Happening Here

Health Hats: Why don't you tell us a little about how this memorial event for Casey took place? What was the genesis of it besides her dying?

Jan Oldenburg: Yes. One of the things that Casey had specified in her will was that she wanted to be cremated and she wanted her ashes spread half in the Humboldt current, up the coast of California near Coronado, where she grew up. Half in the Gulf Street, which is not on the Gulf side of Florida, as you may have thought, as I thought originally, it's on the Atlantic side. And she specified that a portion of her life insurance be dedicated to this event under the auspices of her sister, short of a blood test, Piper. So, Piper with a few family members organized the first boat journey last fall off of the coast Coronado. And they thought through and designed a service. And then they orchestrated the second half, this spring at the end of May, in Florida. And Danny, that's the event that you and I joined for. And it was a mix of family members, people who loved Casey from several of her many incarnations and focus points and I think it was the first time all of us got together, but it was Casey's wishes. And I learned afterwards that part of the reason for specifying these two locations is that eventually the Humboldt current and the Gulf Stream join up and circumnavigate the Globe including I believe, passing past London and the UK.

Health Hats: I participated obviously with you and in the preparation of it that there were several fits and starts, in terms of the logistics now. So can you just tell us briefly about the arranging those logistics.

Jan Oldenburg: There were a number of a lot of moving parts to coordinate. One was the location and a boat of sufficient size, but there was a trade-off between the date, the boat, the size, and how many people could come. And Casey's family. New and connected with family members and people they were aware of, but they didn't know all the people from the healthcare side of Casey's life. So, they asked me to help coordinate that side of it. I pulled in. A couple of people that I knew Casey loved from the Richmond area. That was Myra Isaacs my partner in helping to manage all things Casey in hospice and Casey estate. Hank Burchard who was a longtime friend from West Virginia, and then I worked with several people. Dave DeBronkhart you, Danny, others, to circulate the word, get as much of the word out to people as we could. But by the time we were at that stage of the organization, it was only three, maybe four weeks before the date. And the date was at the beginning of Memorial Day weekend and so people had plans already. And so there were also fits and starts about who could come when they'd come. And then the boat that we were initially going to go out on ended up in dry dock. So, then they had to scramble for an alternate boat. And that changed the date as well as the rain dates and that further churned for some people in terms of their arrangements. It's a combination of lots of people trying to organize something, lots of moving parts in terms of all the pieces and lots of people coming from various points in the country.

How I Met Casey

Jan Oldenburg: I'm Jan Oldenburg. I met Casey, and I think we figured out it was 2012. Wow. We knew each other before that through Twitter, but we met in the flesh in San Francisco at Stanford MedX. And kept in closer touch after that. But it was when I moved to Richmond in 2017 Casey took me under her wing to introduce me to everything in Richmond, which deepened and broadened our friendship.

ePatient Dave: I'm Dave DeBronkhart, known on the internet as e-patient Dave, the patient empowerment guy. I was a cancer survivor in 2007, and then in 2009, I found myself on the front page of the newspaper because I had looked into my medical record and discovered a whole bunch of garbage in there. It turned out it was a significant policy problem in Washington. One night, there was a reception in Washington at Political Innovations, and this loud red-haired woman walked in talking about charisma. I'm going to give you a big wet smack on the kisser. Because she had just gone through her first cancer adventure, and she had an opinion that what I was advocating for was a good thing. She was not going to, the fact that none of us had ever heard of any such thing.

Piper Dankworth: Casey knew me before I knew her because she was older, and we'd known each other since I was born. So, she is the older sister I never had; as she used to say, you are a sister short of a blood test. I grew up with her and CeCe, and we shared love of horses, love of the sea, love of martinis, love of Buffet, and she's just been a dear friend of mine for sixty-six years. Wow. Nice.

How did you know Mary Casey?

CeCe Casey: I'm the second of the Casey kids. Mary, yes. I can call you Mary. It was first me and then Mike.

Michael Casey: She used to refer to me as Rotten Baby Brother.

CeCe Casey: I learned a lot from Mary. Mainly not to call her Mary in front of other people. She didn't like her that much, but M Casey Quinlan took me on a tour down to Nashville and Memphis for my birthday. And the way she drove, we made it in record time. I was used to how she drove because I grew up having her drive me to my eye doctor appointments. She went from Chula Vista to Coronado, so I knew exactly how fast we were. I dealt with her a lot down where she went. I met a lot of interesting people. Some of them probably asked how that girl ended up being Casey's sister. Because I'm not exactly exuberant. When we found out that she had cancer, she would just go deep into reading, researching, and talking to people. She has collected so much knowledge that no one has before, and I'm proud to be her sister.

Myra Isaacs: I met Casey around 2008. She was on the Board of Directors of Virginia Supportive Housing. When I was a staff member, we were assigned to work on projects together, and we just hit it off. We have been friends ever since. We had adventures together....

Shana Davidson shares her day-to-day Long Covid challenges using the "spoon theory," a metaphor for the limited energy reserves people with chronic illness face

Summary

The episode explores the fascination with prolific enigmatic conditions, which are common yet complex and often misunderstood illnesses like fibromyalgia, chronic fatigue syndrome, lupus, endometriosis, and long covid. These conditions highlight systemic issues in healthcare, such as various biases and the complexities of corporate medicine and research. Shana Davidson, having personally experienced misdiagnosis and the challenges of navigating these conditions, emphasizes the intersectional barriers faced by women, people of color, and those with mental and spiritual health challenges.

Shana shares her journey with long covid, discussing the day-to-day management challenges using the "spoon theory," a metaphor for the limited energy reserves people with chronic illness face. Shana's experience underscores the difficulties in obtaining a diagnosis and appropriate care, reflecting broader issues in the medical system's handling of chronic conditions.

Throughout, the podcast touches on themes of resilience, the need for advocacy, and the struggle for recognition and adequate research in treating long covid and similar conditions. The conversation also highlights the importance of compassion and understanding within the medical community and society towards those living with chronic illnesses.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to 

Jeff Horner, Yaneer Bar Yam, Melissa Reynolds

Links and references

Episode

Proem

Ants: Prolific and enigmatic. Image by Open Art AI in style of Paul Barson

Prolific enigmatic conditions fascinate me. Prolific (many) is the opposite of rare (few), so not a rare condition. Enigmatic means mysterious riddle. Examples of enigmatic conditions include fibromyalgia, chronic fatigue syndrome, lupus, endometriosis, and long Covid. Enigmatic conditions put a spotlight on isms – racism, sexism, ageism, ablism, paternalism. They reveal a near-universal discomfort with uncertainty. And when you pull back the curtain to try to search or solve, you find the weight of corporate medicine, the research industrial complex, and vested-interest policy making. I know the frustration of years of misdiagnosis. I was misdiagnosed with cardiac disease when I had multiple sclerosis. My privilege insulates me from many cultural barriers and humiliation experienced by women, people of color, and those with mental and spiritual health challenges arising from the diagnostic and treatment journey of those with and caring for enigmatic conditions.

Since 2000, I’ve produced many episodes about Covid. You can find them here through this link or in the show notes: People and communities living safely in a pandemic, making choices for best spiritual, mental, and physical health.

Over the past few years, I’ve tracked the emergence and response to long Covid, been attracted to lived experience, and identified experts, resources, and advocacy. This episode features Shana Davidson, who is intrigued by the opportunity to tell her story and nervous about the energy it could consume. Shana doesn’t live her life out loud as I do. I’m grateful that Shana agreed to join us today.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Learning health is fragile

Health Hats: Shauna, good that you could be here.

Shana Davidson: This is my first podcast ever.

Health Hats: It's painless. We'll have a good time.

Shana Davidson: Let's see.

Health Hats: We'll see. When did you first realize health was fragile?

Shana Davidson: My father is a surgeon. When I was about 14, he had a patient in her forties with melanoma, and the cancer had spread. I can't remember what operation he did. But he started visiting her daily at the hospice. She was in her forties. She had two young kids, melanoma. Gone. She died. And that stuck with me. First of all, I live in fear of melanoma, but also that you can be very young and have something and die from something. So, that's the first time it became evident to me.

Spoons, Spoonies

Health Hats: In several conversations we've had up to this point, you've been educating me, and I wanted to chew on more, which is this whole issue of spoons. I knew that people with fibromyalgia and chronic fatigue syndrome called themselves spoonies.

But I had yet to learn what it meant. And now that you've introduced me, I can't stop thinking about it. Could you say more about it and what it means to you?

Pace Yourself versus Spoons

Image by Teodor Drobota on Unsplash

Shana Davidson: The place to start when you get this diagnosis, whether it's long Covid or chronic fatigue or anything like that, or after you've had surgery, pace yourself. What does that mean, right? How do I do it? See how you feel as you go about your day. That doesn't make any sense to me. I was fighting long Covid, so hard. I think I can push through it. I need to get my work done. I own my own business. There was much pressure.

Then, through various happenstances, the spoon started to click with me. It's a system designed by chronic illness advocate Christine Miserandino, who has lupus. She was in a diner trying to describe to a friend what it felt like to live with chronic pain. And she was in a diner and could grab the closest thing around her: a fist full of spoons.

Budgeting spoons

Anyone with a disease like this starts the day with a certain number of spoons. For most people, it's 12. For people who don't have something like this, you have unlimited spoons, and you don't get tired. Tired and fatigue are different. If you have 12 spoons, how am I going to spend them? At the beginning of the day, you have a constant bank account or spoon account with a budget. If I must do chores around the house, it's two or four spoons. Driving somewhere can be two spoons.

Doing a conference call can be two spoons. I have some conference calls that feel like four spoons. When you run out, you're just done. You can see how quickly taking a shower costs two spoons because of the surprising amount of physical exertion that goes into taking a shower. Then, I have difficulty regulating my body temperature. So, there's a recovery period from taking a shower. I like to spend time in the garden, which sometimes is heavy physical work. Enjoyment can offset physical work. So, if it were a workout I haven't done in three years, a proper workout would be four spoons. But because I enjoy it and casually pull some weeds here and do a little snip there, it costs me only two spoons.

The skill in it is that you can search the internet and say taking your pills costs one spoon. I am taking your kids' costs to school costs x number of spoons. But the wisdom is to figure out the number of spoons for me. The spoon template might say driving will cost you x number of spoons. But I live about 70 miles outside of Washington in the Shenandoah Valley. Any drive I take is gorgeous. So that doesn't cost me any spoons.

It gets tricky to figure out how many spoons you start the day with individually because there's no way to know without experience and trial. Somebody may give you a budget. A friend of mine is not doing very well at all. And she says I have about five spoons at the beginning of the day. But some people will have 15 or 16. With all the apps, Apple watches, and things we have in our lives now, some apps are working on individualizing your budget at the beginning of the day. So that's considerable help.

Image by Teslariu Mihai on Unsplash

Recovery mode variation in spoons

Health Hats: I know people in recovery mode from whatever. I tell them to do one degree less than they think they can. But spoons are different. Are there days when you have one more spoon? Or does it stay steady?

Shana Davidson: That's the problem. I don't have any external thing telling me how many because every day is different, right? As the saying goes, you have good and bad days. You might have more spoons on good days, but you don't want to spend so many spoons that you end up the next day with fewer spoons. I would say that saying do 1% less or X percent or 5% means you must know what a hundred percent is like, and you don't. The other thing I will say about counting spoons is that the woman who developed the system did it because she was trying to communicate with a friend. I want to say to someone that I'm canceling our plans. I don't have any spoons. I'm canceling this meeting because I don't have any spoons. I'm canceling this doctor's appointment. I don't have any spoons. That makes me feel a lot less guilty. A big part of long Covid is feeling guilty for not being part of your life and the