Health Hats, the Podcast

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

Summary

Contents

Table of Contents

• Episode
  • Proem
  • Podcast intro
  • Off-road wheelchair travel
  • Introducing Philip Shadle
  • Travel in Costa Rica
  • Foundation Business Model
  • All-Terrain Wheelchair Models
  •  Call to action
  • Training for Off-Road Travel
  • Birthing the Foundation
  • Expanding the Foundation Offerings
  • Grateful
  • Contest
  • Reflection
  • Podcast Outro

Please comment and ask questions:

Production Team

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.

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.

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

Health 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.

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.

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.

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.

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.

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, and commenting makes quite an impact. Thank you.

Health Hats: My wife’s a hiker. She would hike the Grand Canyon or another National Park with our friends every year, and I’d stay home. Okay, whatever, I can’t do the Grand Canyon. Those days are over for me. Then, when they wanted to go to Spain and hike the Camino de Santiago, I said, forget it. I’m going. We’re figuring this out. I developed a training plan for myself: what do I need to do to be able to do 14 days of travel? What about when I can’t do all those things? How am I going to travel on a train or a bus? It made me up my game in terms of figuring out how to be accessible or how to have access. See my travel videos here.  Oh my God, my mental health. I can’t tell you how much it helps my mental health. I can do shit,

Philip Shadle: That’s right, realizing you’re no longer restricted.

Health Hats: Everybody has restrictions. That’s just the way it is. For some, it’s fear, like I would’ve never gone on that bridge. I wouldn’t have walked across it able-bodied, but here it was. This guy set it up. He was there. And I am like, Hey, I’m here. And once I go forward, there’s no going back. Because you can’t back up because there are people behind you, and you had, I had to do it. And, so then that’s, yeah. So, then it’s, oh man, so I’m 71 years old, and I have these disabilities. I’m an old fart, plus I’m gimpy, but still. So anyway, I want to thank you guys.

Health Hats: What a great business.

Philip Shadle: We would like to think that it’s Aimee’s creation in her mind after her accident and discovering that she was limited to what she could do versus what she used to do. Her first idea was to create a park accessible to all people and put in specialty items. And then the more she thought about that, the more it’s no. We don’t need a specialty park. We want to go where everyone else goes. That’s when she came up with the idea and contacted me in 2019. She had researched and seen the Action Track Chair, and we took one to her. She mapped some trails in a state park and was thrilled, laughing and driving through the creeks. She said we need to put this out there so that people can enjoy the same state parks that the general public enjoys. The idea of an adaptive park got pushed aside because it made no sense. We don’t want to go someplace special. We want to go where everybody else goes.

Health Hats: Are you thinking about other states doing it? Are other states interested?

Philip Shadle: Very many other states are looking to us. Look at our model. They call and advise. We are welcome to help other states, but we focus on Georgia. We’re just doing our phase two that we’re calling, putting nine more chairs out this year. They’re all out except for two. We will have 20 chairs in the Georgia State Park historic sites. We have three additional tiers in national parks in Georgia, including two in Cumberland. If you haven’t been there, that’s a fantastic place.

Health Hats: So, are the new ones smaller and lighter?

Philip Shadle: We have several different models. Some of the same models in the parks have a narrow version, and then there are newer ones. Aimee’s, which you saw, is 30 inches wide. It goes up the ramp into her van. She can drive up there just like she would in her everyday power chair and then transfer her swivel into the driver’s seat.

If you have some of the bigger models like what you enjoyed at Cloudland Canyon, people will haul those usually on a trailer or in the back of the truck if they do. Many of my independent users have a trailer, and the attendant control you saw allows someone to guide the chair and load or unload the all-terrain chair while you’re in your everyday chair next to the trailer. So that’s one way of doing it by yourself.

Health Hats: I like renting an all-terrain chair instead of owning and storing one.

Philip Shadle: This year, we introduced a new program. We purchased a big empty cargo van that can move the track chairs. We’re going to have 20 parks that host the chairs. They’ll live in the park, but if you decide to visit another park, we’re mapping ten new parks that are not hosting a chair, and we will put them online. Maybe you decide you want to have an event, you and your buddies all want to get together, and there are four of you. You’ll give us advanced notice. We’ll go around and pick up four chairs and get them all in one location for you to use for your event. We want people to be able to use the state parks. The state parks are amazing. They have so much to offer; we want people to enjoy it.

Health Hats: Thank you. What a gift. You must have a team. Thank them for all the excellent work they do. Here’s one person who appreciated it. I had the time of my life. I’m still buzzing. It was a thrill, a total thrill.

Philip Shadle: There’s one other thing I could lead with you that you might want to fit in there somehow. On June 1, we’re going to launch a sweepstake, and we are going to be giving away a brand-new action track chair. You get an entry for a donation, and there are different levels of donations and entries, so the sweet takes work. And it’s going to run through September. People will have a reasonable time to see, share, and participate. And then we will give away a brand-new action track share, just a time for our beautiful fall weather to get out and watch the leaves change. Anyone In the 48 contiguous states can apply. So, it’s going to be exciting. They’re going to get to choose the size. It will be the model you rode in, but they choose their size and color, and the manufacturer will custom-build it. We get to deliver it and make somebody very happy.

Health Hats: Alright. Thank you so much, sir.

Philip Shadle: Thank you.

I’m still high off my two-hour, two-mile all-terrain wheelchair experience. I did it, I did it, I did it! I had plenty of help: a team – the Aimee Copeland Foundation, Action Track Chair, Georgia State Park rangers, the airlines, and my travel friends and family. Any of us can benefit from warm and sensitive workflow, device, and personal assistance to expand our abilities. It’s humbling and exhilarating. Onward.

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band.

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Related episodes from Health Hats

https://health-hats.com/pod191/

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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)

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

Table of Contents

• Episode
  • Proem
  • Podcast intro
  • Introducing Aaron Carroll
  • Health is Fragile
  • Writing a Prescription Isn’t Enough
  • Fix it
  • Phase one: Independent Investigator
  • Phase Next: Mentor, Communicator, Responder
  • Academy Health
  • Communicating Science to the Public Where They Are
  • The Practice of Communicating for Impact
  • Engaging Lived Experience
  • Patients Included at Academy Health
  •  Call to action
  • Key Points
  • Lived Experience at the Table – Your Lived Experience
  • Research Skepticism
  • Learning When the Hypothesis isn’t Proven
  • Implementation Science
  • Efficacy and Effectiveness
  • Trust and Listening
  • Repetition, Repetition, Repetition
  • Reflection
  • Podcast Outro

Please comment and ask questions:

Production Team

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

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.

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

Health 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 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.

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.

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.

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?

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 answering this major problem?

That later transitioned into my becoming Chief Health Officer for Indiana University. We focused on mental health and several other initiatives.

I’d always been an Academy Health member and had known the previous President, Lisa Simpson, my entire career. I’d always considered her a mentor, and I knew that when she was stepping away. This was a real opportunity. Academy Health is all about bringing data and evidence and improving health and healthcare for all. That’s our mission. Suppose you follow the threads of all the phases of my career. In that case, they are all about how we take data and evidence and bring it to clinicians, patients, researchers, the public, legislators, policymakers, and public health to do a better job for health and healthcare.

And so, I said there would only be one or two jobs that could be a dream job. I’d love to do that someday. When this opportunity came, it was too good to pass up because our mission is to take data and evidence and bring it to improve healthcare for all.

Health Hats: Quite a story. I’m glad you’re at Academy Health. I’m also a patient and caregiver stakeholder on the Board of Governors of PCORI. Academy Health and PCORI’s work melds together. Targeting the non-medical population is so important., The PCORI Board spoke last week about how medical practice changes. It isn’t just changing practice. You could successfully change practice and still not impact what’s happening in people’s lives. I suggested that we ought to say changing practice and life.

You’ve experimented with different tools, methods, and channels—communication to the non-medical community. So, what have you learned that you’re bringing with you into your Academy Health gig?

Created by Allison Saeng on UnsplashAaron Carroll:  You need to do a lot of things. Too many people think science communication is about finding that perfect soundbite, that tweet, or that TikTok that’s suddenly going to change the world, and that is not how it works. Good science communication is retail, detailed, and requires repetition. It requires the

Image by Vitaly Gariev on Unsplash

building of trust. People understand where you’re coming from, why you’re saying what you’re saying, and an explanation of how it gets done. There must be two ways for people to ask questions, have them answered, and feel heard. Too much is uni-directional: just let me broadcast it to you. It also requires a bunch of different media. The same people who might read a column in the New York Times are not the same people who might read my blog, nor are they the same people who would listen to our podcast; they are not the same people who might watch our YouTube videos. Often, the content is similar, but how we give it, how much time it takes, and which of your senses you’re using differ. It’s essential to meet people where they live and where they are getting their information. Do not believe that there’s just one solution that works for everybody. It’s also essential to ask questions and listen. We regularly survey our community on their professional and personal needs, how they communicate, and how we might be better reach them. We work hard to train our members to do this better.

Image by Alex Shuper on Unsplash

Our flagship online course, Communicating for Impact, is designed to address this need and covers the foundational aspects of strategic communication- Knowing your audience and crafting effective messages. Choosing the proper channels to deliver those messages is much of what I was talking about. We’ve also recently piloted another online course to address misinformation and how researchers can use communication strategies to build trust with key audiences. It is not enough to wait till something terrible happens and then post a counter. It doesn’t work. Sometimes, it doesn’t work to bring attention. Still, if you can build that crucial trust over time, you can prebut not rebut, but prebut by getting people to think better about how they take in information, to question its truthfulness and how much they should trust where they’re hearing it, and what they’re hearing. But again, that takes time and effort.

I don’t want to say it’s easy; I’ve spent 15 or 16 years with this being one of my true passions. As you practice it and do more, you get better at it. No one is born with those skills. That’s one of the things people also mistake: they think you’re born a good writer, or you’re born able to do video, or you’re born able to do podcasts. It takes time. It takes practice, just like anything.

Health Hats: I’m like you. I know there are readers, listeners, watchers, and long-form people: there’s the one-minute person, the six-minute person. My grandsons are good written word and video editors. I talk with them about the one-minute shorts on TikTok and Instagram. They’ll tell me I’m burying the lead. Don’t worry so much about the end because nobody will get to it.

Aaron Carroll:  There’s wisdom in that. Even when you’re writing columns, I learned to watch my editor, every single time, take the bottom paragraph and move it to the top because we instinctively think, oh, you want it upfront.

Image from https://www.pcori.org/engagement/engagement-resources/engagement-research-pcoris-foundational-expectations-partnerships

Health Hats: I wanted to talk to you about having people with lived experience from beginning to end. The nuts and bolts are challenging because people have varied skills, interests, styles, and time. We were talking about it at PCORI. We have a Methodology Committee., It bothers me that no people with lived experience are on the Methodology Committee. I had lunch with the new chair of the Committee. We talked about looking for a person who started with lived experience with chronic illness and then learned skills about statistics and research. Then, we could have a scientist who became a born-again patient. So, the lived experience came from two different directions.

Aaron Carroll:  Yeah.

Health Hats: Academy Health has done much over the last few years by working with people’s lived experiences. So, what are your aspirations for this new role?

Aaron Carroll:  Well, partnering with communities and those with lived experience is a priority for Academy Health. Much of what we’re trying to do is make research better. And we all know that those kinds of partnerships improve research. For instance, an Academy Health team supports ten community-led research grants. These go beyond just community engagement to community leadership. The research projects elevate community voices. And make the priorities of communities the primary goal of local health system transformation efforts. The funded studies address local healthcare, individuals, or systems. They address local healthcare system issues and importance to communities of color—people with disabilities, LGBTQ-positive individuals, and other historically marginalized populations. We proudly hold patient-included events such as the upcoming Health Datapalooza. I’m pretty sure you were a scholar at that last year. I’m sure you have a lot to contribute and talk about. That conference has met patient-included criteria since we began hosting it in 2016. We want patients involved in the design and the planning to speak and attend. We offer financial support for travel and accommodation as much as possible. We accommodate disabilities as well. It’s critical—we push the envelope there. I’ve been pleased to see that AHRQ and even the NIH are much more focused on patient-included research, not just in one phase, but trying to get people with lived experience who can contribute necessary components through research from its conception to its design to how we’re going to publish it and disseminate. It’s crucial if for no other reason it’s about building trust. It’s about creating that community so that when we finally get results and want to go out and implement them, we get the buy-in that people feel heard, trust the healthcare system or other parts of the system, and hear them.

I now have one URL for all things Health Hats. https://linktr.ee/healthhats. You can subscribe for free or contribute 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, and commenting makes quite an impact. Thank you.

Health Hats: So, what do you want this audience to know about you, Academy Health, or your upcoming conferences?

Aaron Carroll:  We want people to be involved. We’re not just an organization of MDs and PhDs. We are an organization dedicated to using data and evidence to prove health and healthcare for all that. It necessitates having people with lived experience at the table. We’d love for people to attend our meetings. As I said before, Health Datapalooza is probably the one that focuses most on that. It’ll be in September. Registration just opened. It’s at Academyhealth.org/Datapalooza. I’m sure you can find the link attached here. Please become involved in the organization, attend the meetings, and participate.

We want those voices. A month or two ago, I was at our Health Data Leadership Institute, and there were patients and those with lived experience who sat on the panels and taught others how to do this critical work. We want to be inclusive. We are not just looking for academics. Something like just under half of our membership comes from academics.

Health Hats: That is dramatic.

Aaron Carroll:  We have people come from government; people come from us, and our members come from, you know, non-profits. And for-profit corporations, they work at think tanks. Some are people like you who have lived experience and have something to contribute to that evidence base and put it into use.

Health Hats: I am a big shot at PCORI, so I’m eyeball-deep in research, not as a researcher, but I’m quite the research skeptic because I feel like I’m more than aware of what it’s not. You did a series on the research industry, which I found fascinating. One of the things that’s interesting to me about research is that I feel like implementation is local.

If you research appendectomies and antibiotics versus surgery, that’s one kind of research. But the stuff about the system and community is different. The key seems to be that somebody cares enough to dog it where they live. I’m not sure what the generalization is. How do you allocate dollars for local because that’s where the experimentation and some good ideas happen?

Health Hats: Then there’s stuff that doesn’t work or get published. But if anyone is like me, I learn way more when what I tried didn’t work than when it did.  I was an editor of the Journal for Healthcare Quality and on the editorial review board for about 15 years, and we tried our darnedest to get people to publish about stuff that didn’t work. We got maybe five submissions in 15 years. It was maddening.

Aaron Carroll:  It is so hard, and one of the problems with how we do research is we want positive results, and all the incentives are aligned to try to make that happen. And so, people wind up, even if it’s not consciously, driving the way that they create the study, the way they design it, the way they do the analysis and the way that they talk about it, all to make everything—looking more positive leads to results that sometimes aren’t reproducible and take us down blind alleys that don’t work. It also means that we don’t learn like we should because, as you correctly noted, we learn just as much from our failures and mistakes as we do from our successes. It’s also a problem that when you do a study, it’s just a perfect, idealized, unrealistic environment.

Aaron Carroll:  Just because something worked in that environment doesn’t mean it will work the same in the real world. There’s a vast new branch of science called implementation science, which looks at how we accurately take this over here in research and then make it work in the real world, which is much more complicated than people think. At the end of the year, we have another conference called our Dissemination Implementation Science Conference, which focuses on that. How do we get the results out to the world so that people know about them, and then how do we correctly implement them in ways that will work?

Aaron Carroll:  We always talk about two words we throw around in science. There’s efficacy and effectiveness. Efficacy is how it works in a perfect situation. So, when the FDA approves a drug, it’s often efficacious. We know it can work in a perfect environment where you will get benefits and the harm is minimal. But if it’s too expensive, if people can’t get it, if there are shortages, or if people don’t know about it, then it’s not practical. It doesn’t work in the real world. Too often, we focus on one, ignore the other, and do so to our detriment because effectiveness is the real world. We must get much better at making those. But again, that’s all about trust, making sure people feel heard, communicating, and getting the results out there. We will then work to ensure that as they are implemented, we get the same results we think we should get based on studies in a non-real world.

Health Hats: The only thing I would challenge you about is making people feel heard. I think it’s listening. I don’t feel heard. I think we listen.

Aaron Carroll:  Absolutely. Well, I say make them feel heard because listening is necessary but requires communicating back, so it’s not just my hearing you; it’s also ensuring I repeat it. So, it’s a two-way street, but I agree that listening is critical. It’s also engaging in communication.

Health Hats: I was at an event. I was talking to somebody and listening, but they stopped and said, “Is that the podcaster in you?” And I said, no, I’m just listening. This is listening to me. They were suspicious of me because I didn’t interrupt them with all my thoughts. It was more I was asking clarifying questions or saying, I think what I’m hearing is this. I was taken aback. To have this little strain of suspicion when I was actively listening. What are you going to do?

Aaron Carroll:  It’s funny because, when I think about our pandemic response at IU, people will talk about the labs or the tests or what we built, but I still maintain that one of the most important,  successful things we did was webinars, not just every week, but sometimes multiple times a week. I’d answer the same questions repeatedly, and people would say, don’t you get frustrated? But that’s the work; it’s reiterating it back and back and back until people know that I’ve heard, and I’ve answered, and I will answer again. I will explain why, not just in one word, but try to explain it. It takes effort and time, and it can be grinding work. Please don’t take that the wrong way or that I’m upset about it. There is no quick fix; it takes repeatedly listening, processing, and talking to each other.

Health Hats: In my quality management professional days, being a group leader, often they would say, that was my idea. And I would respond, yeah, and this is a success. Somebody is selling this as their idea.

Aaron Carroll:  Yep.

Health Hats: Congratulations, you did your job. This is not the kind of credit we need. Thank you very much for this. If there’s anything I can do for you, let me know.

Aaron Carroll:  I appreciate that. Just stay in touch with us.

We make many health decisions every day, both consciously and unconsciously. Some are as simple as scheduling an appointment or avoiding certain foods. However, most of our health behaviors are driven by habit and inertia. During the early stages of the COVID-19 pandemic, I led a group exploring people’s questions about the virus. We discovered that much of what people wanted to know wasn’t being addressed by funded research. As a member of the Board of Governors for the Patient-Centered Outcomes Research Institute (PCORI), I’ve observed that the scope of patient-useful research is limited, and the implementation of results is inconsistent. These are my personal views and don’t represent PCORI’s official stance. PCORI focuses on Comparative Effectiveness Research (CER), which compares different medical treatments or practices to help patients and stakeholders make informed decisions. My experience has shown me that there’s room for improvement in making research more relevant and accessible to everyday people. My role on the Board allows me to identify small but impactful ways to influence the research industry. I’m particularly interested in research methodologies that can effectively study patient and caregiver experiences, functioning, and decision-making processes. Check the show notes for a link to an AI generated compilation of some of these methodologies.

These methodologies need to be validated and widely accepted within the research community. Organizations like Academy Health and PCORI are natural partners in this endeavor. I greatly value the work of Aaron Carroll and his team, and I appreciate the opportunity to learn from their expertise.

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band.

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Related episodes from Health Hats

https://health-hats.com/pod218/

https://health-hats.com/building-capacity-building-power-citizen-power/

https://health-hats.com/pod125/

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)

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

Table of Contents

• Credits
• Episode
  • Proem
  • Podcast intro
  • There’s Something Happening Here
  • How I Met Casey
  • Call to action
  • Photo Tour with Historian, CeCe Casey
  • Jan and Danny sign off
  • Reflection from Hank
  • Podcast Outro
  • Creative Commons Licensing

Please comment and ask questions:

Production Team

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 

Music behind photos scraped from YoYo Ma on Fresh Air

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

This transcript DOES NOT include images. 

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

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.

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

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.

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. It was fun.

And I met Jan. I still can’t remember exactly where, but like once, probably five years ago, and didn’t stay in touch. That’s right. Anyway. And then, because we got so involved in just seeing that things weren’t together and needed to be, I went to Casey one day and said, what do you want me? Do you want to step up? She said, you pretty much did the same thing. And she asked us to try to help as best we could. My pleasure. Unfortunately, my husband had just passed away the year before, so I had expertise that I didn’t want, and I had, and I felt like the best thing I could do was pass that along. And it did help because we were going on the journey with hospice, and I also have a background in healthcare

Danny van Leeuwen: I’m Danny van Leeuwen, known as Health Hats. I have no idea how I met Casey. I can’t remember. I would say we were partners in crime because she was a revolutionary, and I’m not so much. I’m more of a figure-out how everything works and tinker with the system to our benefit. We helped each other from different points of view. It was helpful. Yeah, I think we had. Then she started her podcast, and I was podcasting. I advertised on her podcast, and then she started failing and was having trouble getting her podcast out. We would get together and have a recorded conversation. Then I would edit it for me to use, and then I would edit it for her to use her intro and outro, so they were different but the same. We did that, I don’t know, three or four times. Four. Four, okay. We did those four times over the years. And that was a hoot and an essential relationship for me.

Hank Burchard: Hank, Casey, and I go back to the late 20th century, a whole other millennium. She and I met through an affinity group for the Patrick O’Brian sea novels. And my function in her life was to be her hunting guide. We hunted him on my property in Maine and wherever else the law allowed. My role was restaurant guide in Richmond. She and I visited all the good restaurants in Richmond and made a good start before things went wrong.

And but you turned her into quite a hunter. She had a musket loader gun. She was a born hunter. All she needed was somebody to hand her a gun, and she picked it up extremely fast. And because she’s a woman, she wasn’t playing macho.

CeCe Casey: She ended up with a bear rug.

Myra Isaacs: I named him Fred. Fred freaked me out every time I walked into her room, so I was happy to have to say to Fred I might have a friend

Laurie Rogers Stukel: I am Mary Quinlan Casey’s or Mary Casey Quinlan’s youngest cousin on the Rogers side of the family. And I guess I’ve known her all my life; she was the oldest cousin and somebody I have always admired or admired so much for what I saw her do on stage. And I went to New York City when I graduated high school.

I went to school and met her at NBC, and she showed me around and always was somebody I looked up to. We didn’t grow up together other than all the beautiful times we had as cousins. We have 13 amazing cousins with whom we have spent a lot of time. But she was always the oldest and somebody I always looked up to.

Then, in 2010, I got breast cancer, and I didn’t. I did know that Mary had breast cancer, but it was unique because we didn’t have it in our family at all, which doesn’t matter anymore. But we had that in common, and she provided me with so much information and inspired me so much, and I’m very thankful for her. And I miss her. She saw me here in Florida, and I was just overjoyed that she had come and spent some time here. Very happy to meet you all. We’re close friends.

Amy Price: I’m Amy Price, and a lot of us here. I don’t know exactly when I met Casey because Casey kept coming in and out of my life. We both had a bit of a revolutionary bent and that resilience. And what I admired is that with that strength, she had such a gentle compassion for people who weren’t strong like that or that, who couldn’t speak for themselves. She had a lot of tolerance, and she was kind. I just loved her. She was an awesome writer. So sometimes we would go back and forth, like writing things. At BMJ, the most fun I had with her, I think, was when we were in London, and we were filming a movie, like a class on co-producing research with patients.

Michael Casey: Sounds riveting.

Amy Price: Yeah, it was fun. We just went over it and ate the whole time, which was also excellent.

Michael Casey: She always had a nose for the best restaurants; you can find them anywhere. Come to San Diego. Take me to great restaurants. I’d never heard of it.

Amy Price: She could make art from anything, whether it was speaking, movie, writing, actual digital QR code on her chest, that QR code on her chest. And what kind of statement is that? And that statement lives on. I think several organizations are translating that.

Jan Oldenburg: The QR codes are becoming an HL7, a health level seven standard. It’s becoming a standard. The QR code is this big on your chest. Not, it’s not being quite literally translated in that way.

Michael Casey: All right. QR code. Really? Yeah. So, let’s think about QR codes for a minute now. Anyway, yeah. I’m trying to avoid this, but so yeah. How long have I known Casey? Since my birth, blah, blah, blah. But she was always going back to what Laurie would say in my life; she was always like this occasional special guest star when I was a kid. Because she would be in college or she’d be in New York, and then bam, she’s there. And everything’s different when she’s there. Yeah. And I had this kind of hero worship thing for her for most of my childhood because she was just so resolute, and when she wanted something from God, she went out and got it. I don’t know. She made a big impression on me that way and had a sense of humor that just wouldn’t die, and it came in useful many times. I went through some rough stuff in the nineties with my younger two kids or my older two kids. And she was by my side through this whole thing, not physically all the time, but she was constantly checking in with me. And how are things going? And then, when she had cancer later, I did try to do the same for her, but I know that it was more natural for her than it was for me. And she just was, like you say, compassionate and caring about the people around her, and she wanted them to do better and have a better life.

I can’t believe it took her as long as it did to figure out this angle on healthcare that she had. But she wrote a book, as you all know, Cancer for Christmas. And that’s right. That’s her, like her, so on brand for her. To turn a life-threatening medical situation into a gag life, you know, ‘s a lot of courage. That’s a lot of courage. And I keep saying she’s been going up a little while now. I keep coming across things where I want to find out her opinion. I can’t; she has always been the coolest. No. But she was always the coolest of the three of us. She knew more about music and culture than anybody I knew. When I was in second grade, she gave me a copy of the album Cream on my birthday, which, if you think about second graders, you might say advanced.

Maybe he’ll like it, but I listened to it and became a Cream fan. It was crazy. And then she got the first Harry Potter book and sent it to my oldest when Scholastic was still publishing it, and there were like 20,000 copies of it in the world or whatever. And she just said this is going to be great. This is a great story. And she was right. She didn’t know how she used it, but they would get it. But that’s the kind of cool hunting that she would do. And so when I come across stuff, I’m like, no. What does she think of this? I miss not having her here to be able to ask her.

I now have one URL for all things Health Hats. https://linktr.ee/healthhats. You can subscribe for free or contribute to 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, and commenting makes quite an impact. Thank you.

Casey’s sister, CeCe, took us on a historical photo tour of Mary Martha Casey’s life. I’ve selected several photos to share in the video and written version of this documentary, which can be accessed here  https://health-hats.com/pod221. The tour was not chronological, although this presentation is, sort of. I selected some music to help blend the disjointed nature of the audio. We start with Mary and her mom, Betty. Then that’s Mary having a very in-depth conversation with Santa Claus when she was maybe five. I think that was a Halloween costume or something. I don’t know.

This is one of my favorite pictures of Mary Casey.

What is she doing there? Five or something, and she’s on, she’s on the phone with somebody looking very attentive and just yakking up a storm now. Then, the 610 North picket was in the front yard with the three Casey kids and one on a horse.

She got the part of Aurora in the school play. She was in eighth grade, and they went out and bought or rented a spinning wheel.

She took us all to Yankee Stadium.  Dad had been to Yankee Stadium when he was a young guy in the Navy and not since.

She asked for dispersal of her cremains on the oceans. No wonder.

Casey doing stand-up comedy

Health Hats: The memorial happened Memorial Day weekend. It was a hoot and a half. So, from your perspective, what did you get out of it?

Jan Oldenburg: It’s a great question. I, because I have been living with Casey’s dying now for more than a year. And by that not just dealing with the emotional fallout of it, but also dealing with the state issues.

Health Hats: And because you’re the executor, right?

Jan Oldenburg: One of the executors. Because I’m the executor. I have felt as if along the way. I was probably the only person there who, I knew everyone except one of Casey’s cousins. And I think I was the only person at that intersection of all the moving parts. And I also had been talking to various people as I was trying to figure out, things about the estate. And so, in some respects, I had thought that I really had done my grieving. But one of the things I realized was that I really needed the ritual and the ceremony and the gathering together and the telling of stories to have the process come to some sort of completion. And for me, that was important.

Health Hats: I loved hearing about all these different chapters in Casey’s life. I especially, appreciated hearing about Casey as a sailor and a hunter. These were nowhere in my grasp of her I knew she was very eclectic. I loved hearing the stories. Grieving is an opening of your heart. You just don’t know When you open your heart, you don’t know. You don’t know what’s going to come out. So, it’s nice to grieve in a safe space and I felt like this was safe and the grief, certainly the, emotion, the, that feeling in your chest and your throat and your God, everything, your gut. But also, oh, another adventure I felt my. My life with Casey, was an adventure and so this was nice to have yet another adventure with her.

Jan Oldenburg: Absolutely. It was, I was so glad I went and so honored. Be in. The event itself and frankly, in Casey’s life, she cast a big shadow, but she also opened a big tent. It was it was lots of room for every kind of person and every kind of adventure and I really felt like I got a little bit of a snippet of that from, the time I was able to spend with Casey, and it was renewed and refreshed by hearing those stories from people from all over her life.

Health Hats: Thank you.

Jan Oldenburg: Thank you, Danny.

Snuggled in my forgotten hunting bag as we left for the dock were several miniatures: Captain Morgan rum, Tito’s vodka and Hennessy Cognac, which I’d intended the three of us to stream overboard to cheer Casey along, with a travel-size flask of Tabasco as coda/kickstarter.

This morning, I took them down to my creek, where Casey often crossed the bar, and whose riffles sang to her as she stalked Pecker Wood deer and turkeys. Indian Creek flows into the Piney, a tributary of James His River, and on to the Chesupioc, as the original owners knew it, whence mountain waters meander offshore to mingle with that great river in the sea we call the Gulf Stream. Should Casey lag or flag on her long last voyage, may the tipple tide her Thamesward.

I’m so very very glad I did.  It wonderfully expanded my understanding of Casey, with whom my relationship was long and loving but limited. Although she doubled in brass, she left her advocacy career pretty much at home when she came to Pecker Wood, focusing on hunting, fooding, computer tutoring and mourning the decline of the newsbiz, so the round-table discussion of her many parts was a revelation to me. I had signed up for the trip largely from a sense of duty to her shade and you and Myra, but it turned out to be deeply healing. And y’all’s cheerful, capable companionship and caretaking was Casey’s final gift to me

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band.

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

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)

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

Table of Contents

• Episode
  • Proem
  • Podcast intro
  • Learning health is fragile
  • Spoons, Spoonies
  • Pace Yourself versus Spoons
  • Budgeting spoons
  • Recovery mode variation in spoons
  • Contracting Covid
  • Opening up
  • Yikes, Long Covid?
  • Tired of Pursuing Answers
  • Long Covid Center
  • Asynchronous communication
  • Finally Diagnosed
  •  Call to action
  • Rebel Health
  • Social media help – 2-edged sword
  • Useful help
  • Some compassion, please
  • What’s in a Name?
  • Chronic Disease Management – Diagnosis, Symptoms, Care, Treatment
  • Investing in Long Covid
  • Reflection
  • Podcast Outro

Please comment and ask questions:

Production Team

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to 

Jeff Horner, Yaneer Bar Yam, Melissa Reynolds

Links and references

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.

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

Health 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.

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?

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.

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

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 life that you had with people in your life. So, communicating why you’re ghosting everybody, as the kids say, is excellent. But as you can tell, initiating someone into this language of spoons takes quite a while. So, you can’t do it with businesspeople. I can’t do it that way. You can’t explain to somebody who’s your client or your boss; this is why I’m not doing my work today. They’re not going to be cool with it.

Health Hats: Okay, so you got Covid. When was that?

Shana Davidson: I got Covid in September 2021 and then got in again in January of 2022. I got Covid a third time, and now I’m blanking on when it was. But the third time was the most challenging. Maybe I’ve blocked it out.

Health Hats: The most challenging time, meaning you had more symptoms.

Shana Davidson: I need to remember. I think I have blocked it out.

Health Hats: So, was there? Between these episodes, did you feel better?

Shana Davidson: No.

Health Hats: Okay. But we know that you had three episodes because you tested negative for a while, and then you tested positive again, and then negative, and then positive.

Shana Davidson: Back then, you’re talking 2021, which is relatively late into the pandemic, but everybody’s still masking, right? We have the vaccine, and it was one of those periods where you’re, this is over now. And then the whole pandemic kind of went away, you know?

Health Hats: Yeah.

Shana Davidson: Yeah. You’ll remember that first summer we thought we could open. I didn’t keep testing myself throughout the process because it took a while for me to figure out that this was what I had. I had it in September of 2021. It could have been better. I got better.

I went to what amounts to a college reunion. And you stroll the campus, you do this, you do that. And one of the days, I was tired. I’m just going back. I need to sit. I started walking across the campus, where I’d walked thousands of times, and felt winded. I broke out in cold sweats.

I had to sit down. I finally reached my car and sat there for an hour doing nothing. That’s when I realized that this was something. And then it was, and I got it again at the end of the year. But I didn’t test in between those bouts.

Health Hats: When did long COVID enter your consciousness?

Shana Davidson: At college, I felt weird, but it wasn’t until that moment that I had cold sweats and a bad memory. It was intense.

Health Hats: Had you given yourself the label of Long Covid, and then you went to seek an official diagnosis?

Image from Getty Images

Shana Davidson: I started reaching for an official diagnosis after that episode. I had the cardiac stress test. I had the pulmonary test, the transesophageal ECHO, and the ultrasound. And every doctor you see says there’s nothing wrong with you. Oh, you’re young. Go live your life. There’s nothing wrong with you. And you know your head is exploding because you’re like, no, there’s something wrong with me. And to this day, I’ve only had one doctor who has said I’ve treated patients with similar stories. I know what this is. I know how to handle your case. She’s a cardiologist. So almost everybody just tells you you’re crazy.

So, I pursued it aggressively. And then you get so many people not listening to you and so much media out there, right? Did it come from here? Did it come for that? What about this test? What about that study? And you pursue, oh, maybe this is what it is.

I’m at the point where I’m tired of pursuing it. I don’t feel any better. Some non-Western medicine things that I’ve done, such as acupuncture and some herbs, have treated symptoms, not causes. But you get to a point where there’s a new study, there’s a new this, there’s a new that.

And you know what? I’m tired. I don’t want to pursue this anymore. Someone else will figure it out and let me know.

Health Hats: Okay.

From Getty Images

Shana Davidson: This is where I sit. I do my acupuncture, I take my herbs, and I use my spoons, and that’s just where things are right now.

Health Hats: Your find business is so insidious. The doctors mean, this is what I know about. They didn’t find anything they knew about that could help you.

Shana Davidson: Yeah.

Health Hats: But they’re not saying that.

Shana Davidson: I am in a program that, for lack of a better term, prescribes acupuncture right through George Washington University (GW). So, I have someone saying, no, you’re not crazy.

Health Hats: Okay, you’re in a program. What does that mean?

Shana Davidson: It isn’t a study, but a group of people with long Covid who happened to work at George Washington University. We’re curious, and we’re interested. They all had long Covid, but maybe they were interested in treating this and its symptoms.

We’re not going to figure out the cause anytime soon. We’re just not, and that’s what they do. I was lucky to get into that program. And depending on my symptoms, I talked to them. At first, it was regular, and now it’s sporadically or when something crops up, but I had something happen where I lost my sense of taste for six months. So, I contacted them and asked what this was about. And they didn’t know.

Health Hats: Are there some asynchronous communication platforms you use?

Shana Davidson: Yes. They said you don’t have to come into our office initially. We’re going to do this over video. I don’t know what software they use; it doesn’t matter. But we won’t drag you into the doctor’s office, which is one of the hardest things you do with this. One of the hardest things I do is go to the doctor. A big part of it is figuring out, okay, how will I tell this story? How am I going to get them to listen to me? And so you’re like strategizing your doctor’s appointments, which is incredibly stressful and costs many spoons. I’m lucky that I got into that program.

Dentist examining horse’s mouth cartoon in OpenArt AI

Health Hats: I had moved to Boston before I got the MS diagnosis. I got a different family practice doctor because we moved. I was very fortunate because I said something was wrong; she believed me, and she dogged it until we got a diagnosis. It took many months. I don’t know whether I was fortunate to have this family practice doc, I’m a guy, or what. I’m trying to figure out why. Don’t look the gift horse in the mouth. It was wonderful to finally have a diagnosis because there’s a menu of things to do.

I need your help to expand my audience to younger people in advocacy. I’m doing more short-form videos. Please help by pointing me to communities of young advocates and the channels and hashtags they use so I can listen and learn. I now have one URL for all channels and media. https://linktr.ee/healthhats, where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

Rebel Health by Susannah Fox

One of the things that to me is interesting when a person has an exhausting chronic illness. Is that the point where? They have a spoon that they can afford to use for advocacy. Whether to use Susanna Fox’s words, she talks about seekers, networkers, fixers, solvers, and champions.

And having that people’s advocacy, like she has a book, Rebel Health, and that when people are rebels in healthcare or hacking healthcare, they take one or more of those approaches, and it seems like you’ve had, from time to time, a spoon to invest in advocacy.

You okay?

Shana Davidson: I am wondering if I’ve invested well.

Health Hats: Go ahead, please.

Shana Davidson: I’ve written to some newsgroups or Facebook groups or posted things on Instagram. But the number of people who’ve told me to do a cleanse or some diet or you have some cockamamie thing that you’ve pulled out of the sky. Hey, if that works for you, rock on.

But the idea of going on even, some days, I eat what I find. I can’t be cooking a meal. I can’t be meal prepping. What can I reheat today? So, the idea of doing a cleanse or a special diet – no, I’m not. I don’t have spoons for that.

Shana Davidson: And then it’s you’re crazy, lazy, and just don’t want to work. Here are all the ways I can help you, and it’s not useful help?

Health Hats: Yeah. I know. When I had a son who had melanoma and ended up passing, we realized early on that people wanted to help and that one of our roles as care partners was to make sure we had a list of things for them to do. People who loved us loved him, wanted to, or could do that would be helpful.

Because people don’t know, and you’re right, it’s primarily awkward.

Shana Davidson: people tell me I need to take a break.

Health Hats: Oh.

Shana Davidson: That still hasn’t been happening. It’s so that’s a spoon. I am dealing with, if not two.

Image by OpenArt AI

Health Hats: What would you like to happen, and in what way? Think about the medical system and the community. What do you think? What would be helpful?

Shana Davidson: Some compassion generally; I think a big part of the hump here is that everybody wants to be over Covid. We want to put it behind us for excellent reasons. But for a lot of us, it’s still happening. And so when you say I have long Covid with some people, it triggers some people who are taken aback.

They say, oh, are you still infectious? Are you going? Or they say: that’s not the real thing. Those are the two options. 90% of my responses fall into either of those categories. And then there’s about 10% that’s compassionate, but they can’t help you. So, there’s a considerable effort to increase government funding for research. The amount of money they’re spending is tiny. I don’t have the figure on the tip of my head because of the brain fog, but it’s tiny.

Shana Davidson: I would love it if we could find a name for this disease that didn’t have the word Covid in it. We would be taken much more seriously as patients. There also needs to be a dramatic shift in medicine for diseases that we can’t explain. It’s the same thing with people who have chronic fatigue and struggle with being told that they’re lazy or they don’t want to do whatever and are not taken seriously. And I don’t have any optimism about any of that. What can you do? Because it’s more about what I can do.

Health Hats: Okay. Compassion. Yes. Take it seriously. Research our healthcare system isn’t set up for, I was going to say, for chronic illness, but I don’t mean that, maybe for diabetes, for heart disease.

Shana Davidson: I think it’s set up for things you can quantify. And you can understand that if you’re coming from a Western medical or scientific method perspective, we want to identify and treat the cause. Treat that instead of focusing on the symptoms. Frankly, that’s something you can bill for. I have reminders telling me to do things. This is a reminder throughout the day to eat lunch because otherwise, I don’t, which significantly helps. So that’s what that was.

Health Hats: That’s good. Before we wrap up, I’d like to ask what we should have discussed that we still need to discuss.

Exhausted charcoal in OpenArt AI

Shana Davidson: Those are some big topics. The spoons are the best way to go. Also, there are some apps in development. We are working on solving the problem of counting spoons. The most challenging part is figuring out how many spoons you start the day with. Some people trying to figure those out also have long-term Covid and comparable diseases. But that would be something tangible that would help many people significantly. Again, a significant amount of money needs to be invested in this. The number is 26 million people dealing with long-term Covid. Compared to other diseases that are much more acute, we won’t win that battle. So, I’m saying that in some, it feels very hopeless.

Health Hats: I’m very interested in the long-term Covid. I do episodes about it when I want to learn something because it’s an excellent way to learn. And I’ve learned that the way to do that is to start with people with lived experience. So, you’re the first.

So, thank you very much for taking the time. I appreciate it, and I wish you the best.

Shana, thanks for your generosity. When I first learned about spoons, I thought it was a cool idea, helpful management and communication tool, a good metaphor. But it doesn’t apply to me. However, I just returned from a trip to Florida to spread Mighty Casey Quinlan’s ashes in the Atlantic. I almost didn’t go as I tried to manage my weight, my energy, my vision, nerve pain, new meds with side effects – the usual mishmash. But it was for Casey, her family, my peeps, and me. I went. I have had a blast. Now I’m exhausted. Perhaps budgeting these spoon energy units spans weeks for me with MS, not days as for those with chronic fatigue and long-term Covid.

I plan to produce more episodes about long Covid. I have two episodes ready to be produced about travel to Georgia’s Cloudland Canyon State Park, motoring around in an all-terrain wheelchair, and celebrating Casey Quinlan as we scattered her ashes in the Atlantic. I’m interviewing special guest Aaron Carroll, CEO of Academy Health, in late June. Be well.

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Related episodes from Health Hats

https://health-hats.com/covid-19-people-living-safely/

https://health-hats.com/accessible-yoga-honor-your-body/

https://health-hats.com/fibromyalgia-managing-pain-doing-the-work/

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)

Turn-around: Grandson interviews Health Hats about his Zelig-like career path and choices: unpredictable, privileged, mentored, supported, and spiritually healthy.

Summary

Health Hats is interviewed by his editor, grandson Leon, delving into a discussion about his diverse and impactful career. The episode starts with Leon interviewing Health Hats about the origins and motivations behind the podcast, tracing back to a serendipitous naming and a road trip that solidified the podcast’s visual identity.

Health Hats shares his journey from opting out of a higher-paying job that required him to cut his long hair to embracing a path in healthcare as a psychiatric aide, which led him to nursing school.  The story also touches on being a male nurse in the 70s, transitioning from direct care to significant hospital and quality management roles.

Leon and Health Hats discuss the significant impact of personal decisions on career paths, the unpredictability of life, and the profound influence of one’s birth and circumstances. Health Hats reflects on his efforts to improve healthcare systems, advocating for better staff and patient conditions and participatory health. The episode explores Health Hats’ professional life, his philosophy on work-life balance, his role as a change agent, and his commitment to continuous learning and improvement.

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

Contents

Table of Contents

• Episode
  • Proem
  • Podcast intro
  • Birthing Health Hats
  • Nursing school – what’s hair got to do with it?
  • Wanted a life
  • First male public health nurse in Western Mass
  • We don’t hire men in nursing here
  • Retiring in our thirties as back-to-the-land hippies
  • Couldn’t manage an emergency at home
  • Twelve-bed hospital
  • West Virginia, a Third World state
  • Advanced Cardiac Life Support
  •  Call to action
  • Volunteering for the Emergency Squad
  • From direct care to management
  • Change agent: staffing and visiting hours
  • Remote Learning for a Master’s Degree
  • Moving on
  • Student of organizational health
  • Outspoken, driven change agent
  • Best Boss Ever
  • The will to change – leadership
  • No, lay me off
  • Retiring
  • Professional life, more than the job
  • Can’t keep a job
  • Reflection
  • Podcast Outro

Please comment and ask questions:

Production Team

Five-minute episodes on YouTube.

Inspired by and Grateful to 

Jim Bulger and Bob Doherty (deceased), Eric Pinaud, Jane Sarasohn-Kahn, Luc Pelletier, John Marks, Ann Boland, Lynn Hubbard

Links and references

Are medication error rates useful as a comparative measures of organizational performance? was published in The Joint Commission Journal on Quality Improvements in 1994 receiving the David K Stumpf Award for Excellence in Publication from the National Association for Healthcare Quality. The article was referenced in the book, Error Reduction in Healthcare by Patrice L. Spath in 2000.

1977 article about Danny van Leeuwen, the first male public health nurse in W Mass

It sounds like a Zelig effect (if you know Woody Allen) or a Forrest Gump effect (if you know Tom Hanks)

Jane Sarasohn Kahn, a blogging health economist

West Virginia

The University of Minnesota ISP Program

As you may know, my production team includes Grandson Leon, who edits my audio transcript for readability for the 275 Health Hats, the Podcast, followers who prefer reading to audio or video. I call it an article-grade transcript. Leon and I speak often, when I drive or pick him up for school or he drops in for a visit. He critiques warmly and confidently. He often comments on stories and experiences in the episodes. Recently, Leon suggested that he interview me for an episode about my career. You’ve probably heard some of these stories before. In the last episode, I told you about being the first male public health nurse in Western Massachusetts. But you haven’t heard them all by a long shot. Expect more career stories over time.

Image from the movie Forrest Gump

Perhaps a theme for this episode is the unpredictability of life served by the gifts of spiritual health, the ability to find support, and the incredible privilege of birth and circumstances, setting me up to make choices that accrue to my benefit. Sounds like a Zelig effect (if you know Woody Allen) or a Forrest Gump effect (if you know Tom Hanks)

For listeners, please excuse all the times I seem to be running over Leon – talking over him. It’s a function of technical challenges I couldn’t correct.  I assure you that I was more respectful than it sounds.

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

Health Hats: Hi Leon. Thanks for joining us.

Leon van Leeuwen: Great to be here. What got you to start Health Hats, the podcast?

First Health Hats logo by Danny McGinnis

Health Hats: I started blogging twelve years ago. I met Jane Sarasohn Kahn, a blogging health economist, in 2012. When I told her my story, she said, oh, you’re Health Hats. You should start a blog. I did this with help from Uncle Eric and others. Soon after, I drove on a several hundred-mile road trip to the Cumberland Gap in Maryland. I rode in the front, while Danny McGinnis, an artist, sat in the back. He drew an image of my hat on his iPad. I loved it as a logo! How much can I pay you for this? $75.

Leon van Leeuwen: Wow.

Health Hats: I set up a website and began blogging weekly. Seven years later, in 2018, I received an email notice for a podcasting course from Seth Godin, whom I have followed for a long time.  He’s a marketing/inspirational guy sending a daily post, saying the next day was the last day to register for an eight-week podcasting course at the low price of $300. Early in the course, the 350 attendees broke into groups of about 12 or 15.  My group became close and supportive of each other.   We still meet weekly every Sunday afternoon. We’ve been doing that for perhaps 45 weeks out of the year since 2018.  That got me started and motivated to keep podcasting.

Danny/Health Hats circa 1973

Leon van Leeuwen: How did you get into healthcare?  That’s what you talk about in your podcast.

Health Hats: I attended Wayne State University for two years and dropped out to travel extensively – hitchhiking in Europe,

Columbia, Mexico, British Columbia, and across the States.  When I came back looking for work, I had a choice between a job reading water meters or working as an aide at the   Detroit Psychiatric Institute. The meter reading paid more, but I had to cut my hair, and I didn’t want to cut my hair.  So, I took the aide position.

Leon van Leeuwen: How were those your only two options?

Health Hats: I was in the mode of looking, and those were two jobs I applied for. I can’t remember how many jobs I applied for, but those are the two I could get. I must have had interviews because how else would I know I had to cut my hair? They would’ve had to see me. The nurses at the Detroit Psychiatric Institute encouraged me to attend nursing school.

Leon van Leeuwen: Wow.

Health Hats: When I interviewed for the nursing student position, they asked about my hair. I said I can put it in a bun. They said okay.

Detroit Psychiatric Institute abandoned

Leon van Leeuwen: Checking the water meters paid you more than working as an aide in a hospital?

Health Hats: Yes. I made $3.00 an hour as an aide. I could have earned $3.50 an hour as a meter reader.

Leon van Leeuwen:   From there, did you go to medical school?

Health Hats: No, I went to nursing school. A few people asked why I wasn’t going to medical school.  Why nursing? I wanted to have a life. I felt that medical school was, all in all, too much education and too expensive. The nursing school I attended was a two-year program that cost only $11 a credit.

Leon van Leeuwen: Wow.

Health Hats: Yeah. Even then, it was cheap. Wayne County Community College.

Leon van Leeuwen: You mentioned you were the first male nurse in Western Mass.

Health Hats: I was the first male public health nurse in Western Massachusetts in 1976.

Leon van Leeuwen: What was it like to be the first male nurse in that area?

Health Hats: Home care was a great place and way to start. I was excited because I didn’t want to work in a hospital.  I had been working in a nursing home before that. So, I liked the idea of home care. But being a guy was different. My bosses and other staff were very concerned. How would female patients take to having a guy care for them?  I told them I never had any issues when I was one of two male nursing students in my class attending nursing school. Patients want a kind word and a warm hand.  Gender doesn’t usually matter.

Article from the Holyoke Transcript-Telegram Aug 19,1977

Leon van Leeuwen: Yeah. When you’re sick or not feeling well, you are not only thinking about that. It seems a little weird to ask if you’ve had any hardships for being a man, but did you get treated weirdly?

Health Hats: I never did; I never was in that situation. Sometimes, people in certain religions might not want a guy taking care of a woman.  But I never had that happen to me. I didn’t have to deal with it.  On the other hand, I may have benefited from being a guy.

Leon van Leeuwen: Yeah, you benefit from being a guy often, but was home care your first job out of nursing school?

Health Hats: I worked in a nursing home for several months.  It mainly was passing pills, medication management, and supervising aides. I wouldn’t say I liked it.

Leon van Leeuwen: How long did you do home care?

Health Hats: Four and a half years.

Image of Danny and Ann’s wedding in 1975 by Rich Rieger

Leon van Leeuwen: Where did you go after home care?

Health Hats: Grandma and I married in Detroit in 1975, a week after I graduated from nursing. Within weeks, we were trying to decide where to move, and we had several choices: Northern California, West Virginia, or Western Massachusetts.  We decided against Northern California because it was too far from the family in Buffalo and Detroit. So we went down to West Virginia, and I went to the local hospital to find a job. They were not interested in hiring a guy, so we ended up in Western Massachusetts.

House built by Ann and Danny in WV circa 2000

Health Hats: In 1979, when I was 27 and Grandma 28, we retired to be back-to-the-land hippies in West Virginia. We built a house and had your Uncle Ruben at home. I worked with my friend, Rich Rieger, as Sunnyside Construction.  Then, one day, the Director of Nursing at the local hospital, Stonewall Jackson Hospital, the successor to the Director who wouldn’t hire a guy, heard that there was a new nurse in town. She wanted me to come and work for them part-time, which I didn’t do for a while.  But eventually, I did because we needed the money.

Leon van Leeuwen: Yeah, it is astonishing that initially you tried to apply, but they didn’t let you, and then they asked you to work there.

Health Hats:  It was much better to be wanted.

Leon van Leeuwen: How long did you take off from nursing?

Health Hats: Three to four years.

Boland van Leeuwen’s in West Virginia 1982

Health Hats: The reason I got back into nursing was that I was very concerned that even though I’d gone to nursing school and had four and a half years of experience as a professional nurse, I felt like I didn’t know how to handle an emergency that might happen in our community, Jupiter Hollow, the name of the intentional community we lived in. So, I trained as a paramedic.

Leon van Leeuwen: Nice.

Health Hats: Your grandmother and I started working at the volunteer emergency squad. I also started working per diem in the

medical-surgical unit at the local hospital, Stonewall Jackson Hospital.

Then, I got a job in an emergency room at a 12-bed hospital about 30 miles away in Braxton County.

Leon van Leeuwen: Was that the emergency room or the whole hospital?

Braxton County Memorial Hospital circa 1990

Health Hats: The whole hospital had 12 beds.  They had an emergency department staffed by one nurse.   I worked the midnight shift.  We would call in a doctor when a patient arrived.  If somebody came in via the emergency squad, the squad would have to stay and help because only one other nurse was working with the 12 inpatients.  Pretty wild, to say the least.  But then I returned to Stonewall Jackson Hospital to work in the emergency department.  That became a regular full-time job.

Leon van Leeuwen: Was the 12-bed hospital busy at all?   I can’t imagine. It would be ridiculous if it were just one nurse.

Health Hats: A trickle of patients would come in, but if there was a heart attack and a car accident simultaneously, that was a disaster. We would have to call people in literally. It was an excellent job. I learned so much.  I had to be prepared, manage, anticipate, have the equipment, and get help.

Health Hats: It was insane. On the other hand, West Virginia is a third-world state, meaning it is poor.

Leon van Leeuwen: Is that an actual term for a third-world state?

Health Hats: It’s what I say. I mean, it’s poor.  The money is in the resources of coal, gas, and lumber.  It was sparsely populated, with three main cities: Morgantown, Charleston, and Huntington. Remoteness and size made adapting necessary. The state emergency services system was well-integrated and managed. I could radio the Charleston Emergency Department if I were alone without a doctor, yet they would be available via the radio’s speaker. I could talk to an emergency physician while caring for patients by myself.  They would ask me questions about the patient’s condition and advise me while calling an ambulance or sending a helicopter.  So, although I was alone, I wasn’t without medical support.

Leon van Leeuwen: Was this at the 12-bed hospital?  Was it different once you got to Stonewall Jackson Hospital?

Stonewall Jackson Memorial Hospital sign circ 1985

Health Hats: Yes.  Stonewall Jackson was a 70-bed hospital.  At night, there would be two nurses in the Emergency Department, an aide, and a doctor, who was usually a resident, sleeping until patients arrived.  So, there was somebody.  In Braxton County, the 12-bed hospital, doctors were at home, and it would take them 20 minutes or more to get in.

Leon van Leeuwen: Did the experience of working by yourself help you later?

Health Hats: First, I had to be confident – have hutzpah – because otherwise I couldn’t manage it. While becoming a paramedic, the people I met in Morgantown and Charleston taught me Advanced Cardiac Life Support, ACLS. Unfortunately, Neither Braxton County nor Stonewall Jackson Hospitals used ACLS then. So, I started an ACLS training program in the region. From my training and work in Emergency Departments, the people I knew around the state came to help teach. They were a gift! The skills of the people I worked with improved. Much better for me.

I’ll tell you a funny story: when your Uncle Ruben was eight, he and your dad would come to where we worked at the emergency squad, me as a paramedic and grandma as a driver.  Our boys would come and bunk while we went on emergency squad runs.  Ruben got interested in ACLS, and I would take him to some classes.  Then, I took him to the state meetings where we trained people to teach it.  He studied along with the doctors, nurses, and paramedics. He eventually took the test and almost passed. He could read the EKG strips, know the algorithms and medications, and intubate. He just forgot to auscultate (listen) to the lungs after intubation.

There was a cardiologist at Stonewall Jackson Hospital who turned his nose up at Advanced Cardiac Life Support.

Leon van Leeuwen: What do you mean by that?

Health Hats: He didn’t think he needed it because he was the cardiologist.

Leon van Leeuwen: He thought he already knew everything?

Health Hats: Eight-year-old Uncle Ruben took the ACLS course, which put the cardiologist to shame. The doctor didn’t know the algorithms, so he couldn’t use other ACLS-certified doctors, nurses, and paramedics well.  The cardiologist ended up taking the ACLS course, too, because Ruben was taking it.

Leon van Leeuwen: Do you think that’s how Uncle Ruben got into teaching?

Health Hats: I have no idea.

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Leon van Leeuwen: What was working in the ambulance with your wife like working in the ambulance?  Did you see her often if she was the driver and you were a nurse?

Health Hats: Did we get many runs (calls)?

Leon van Leeuwen: Yeah. Or how much did you work together?

Health Hats:  It was great.  Grandma was my driver. She drove, and sometimes we would have somebody else with us; it was all volunteer. When I worked with other drivers, they were hot dogs and wanted to go fast, like flashing lights, sirens, and so on.  I’m not a go-fast guy, but I felt safer since Grandma drove much more sensibly.

Leon van Leeuwen: Yeah. I like using ‘hot dog’ to describe them as hotheaded.

Health Hats: Have you ever heard that term?

Leon van Leeuwen: That’s a good term. I might start using it.

Health Hats: It’s a macho thing.

Leon van Leeuwen: Yeah. I know some people that drive like hot dogs. Did you work in the Emergency Department the whole time you were in West Virginia?

Health Hats: No, because I led this ACLS Program, I knew all the nurses in the ICU.  When the ICU manager left, the nurses in the ICU came to me and said that I should apply to be their manager. I said, you’re crazy; I’ve never worked in the ICU or been a manager.  And they said, you’ll be a fine manager, and we’ll teach you to work in the ICU.

Leon van Leeuwen: Okay, so your staff that since you taught, you knew how to manage?

Health Hats: I guess. So, I went to my boss and told her what they were saying.  What do you think?  She said to apply. I applied, and she hired me. I was an ICU manager for a year or so.

Leon van Leeuwen: Wow.  How different was it?  Did you still do any nursing work?

Health Hats: Yes, it was a small four-bed ICU. I had a dual work-and-manage job.

Leon van Leeuwen: So, you managed only four beds. How much staff was that, then?

Health Hats: I think we might have had a staff of twelve.  We needed at least two for every shift.  Management was interesting. I had to deal with things like having enough staff, and a pool of staff experienced enough to deal with the ebbs and flow of the census, meaning how many patients there are, vacations, pregnancies, or family caregiving.

The hospital was not really into having too many part-time or per diem people because that was the management theory at the time. I thought it was stupid. I argued for more flexibility and was successful with that. It was also the first time I had to deal with a budget, and the ICU was considered a loss leader, meaning that it expected to lose money.  I said I’m not leading something that’s losing money. My goal was to break even.

The most significant expense was supplies, and every doctor wanted their own supplies, so you had to stock all this stuff that stayed on the shelf.  I was very fortunate that the ICU Medical Director, Alan Hirsch, was an internist from Cleveland.

Leon van Leeuwen: What’s an internist?

Health Hats: An internist is an internal medicine doctor, a physician who takes care of adults, something like a generalist for adults, as opposed to a family practice, which is adults and children. He was working off his med school loans by working in West Virginia. Again, it’s a third-world state that needs clinicians. He was open-minded. We were able to do quite a bit together.

Another thing that we did that drove me crazy was the limited visiting hours. If I was in the ICU as a patient, that meant that Grandma could only visit me from one to two in the afternoon and six to seven in the evening or something like that, two one-hour blocks. The staff thought more visiting hours would interfere with patient care. I thought that was ridiculous.  These are the people who are going to have to take care of their loved ones when they go home.  If they don’t have any experience dealing with whatever they’re dealing with, and they’re not learning what’s going on with their heart attack or their GI bleed or whatever, they’ll be readmitted.  I wanted open visiting hours, meaning we were busy or needed space. We should ask them to step out. But my staff was not happy with me at all. Thankfully, Dr. Hirsch, the Medical Director, was supportive. So, we opened visiting hours.

Leon van Leeuwen: If I had a family member in the ICU, I’d want to see them, so it’s essential. It is intensive care. They would want to see their family and loved ones to ensure safety.

Health Hats: It is a safety concern.  Somebody else is keeping their eyes open.

Leon van Leeuwen: You managed the ICU for a while. Where did you go from there?

Health Hats: While a nurse manager at Stonewall Jackson Hospital, the Nursing Director, CEO, and Chief Operating officer encouraged me to get my Master’s. They had gone to the University of Minnesota in the ISP program, a remote learning master’s program. They sponsored me to follow.

Leon van Leeuwen: What year was this?

Health Hats: I graduated in 1993.

Leon van Leeuwen: What was the learning like?  When I picture remote learning, I think of Zoom.

Health Hats: No Zoom, then. For the three-year program, students went to the University of Minnesota for two weeks during the summer and stayed in the dorm. During those two weeks, we had half-day sessions, two a day for two weeks, introducing each curriculum chapter to occur over the year. As it was a worldwide program, students in proximity would get together monthly with the CEO of some hospital near them.  So, a guy in Kentucky who was a CFO Chief Financial Officer and I went to the University of Charleston Hospital to meet with the CEO, our mentor, for a day once a month. Then, there were regional meetings once a year with several of the monthly groups. Since our monthly group was remote, the Kentucky CFO and I met with the international groups in the regional meeting.

Leon van Leeuwen: Minnesota and West Virginia aren’t close.

Health Hats: The Puerto Rican contingent of the international groups hosted us at the University of Puerto Rico. We traveled a few days around Puerto Rico with our spouses or partners.  We took one day for schoolwork. In the second year, we went on a cruise together.

Leon van Leeuwen: Wow. So, for the remote learning, what did you do in West Virginia?

Health Hats: The ISP remote learning program required you to be a working manager because your job was your laboratory.  So, if the study unit was about staffing, it was about staffing in my ICU. If the study unit was about budgeting, then courses or modules had to be about the budget of your department, which helped me with the whole goal of trying to break even. I had a lot of help figuring that out because I had this idea that I wanted to break even, but I had no idea how. I was ignorant.

Leon van Leeuwen: Did you accomplish it?  Did it break even? What did you do?

Health Hats:  Staffing made the difference.  Most expenses are in people and materials. So, with help from fellow ISP students, I figured out how to have efficient staffing. Part of that was having that pool of part-time and per diem-trained people. My fellow students helped me determine how to make the business case and why part-time and per diem were cost-effective.  And then the equipment, as I mentioned before, and what else?  They taught me a lot about strategy and project management.

Health Hats: When the Director of Nurses left Stonewall Jackson Hospital, the CEO and COO wanted me to become the Director of Nursing.

Leon van Leeuwen: Definitely.

Health Hats: I didn’t want to. I couldn’t imagine working for the CEO; I thought he was such a jerk, and I just would get in trouble. Then it was time to go.  I applied for several jobs through a headhunter and became the Director of Quality Management in Cobleskill, Schoharie County, New York.

Leon van Leeuwen: Wow.

Health Hats: That was my first job as a student of organizations rather than a student of people.  The Schoharie County Hospital offered an opportunity for us, so we moved. Your dad, who was not into moving, moved kicking and screaming.

Leon van Leeuwen: Yeah.

Health Hats: That was a challenging job. I tried to leave from the day I arrived, but that’s another story. My next job was with the Healthcare Association of New York State (HANYS).

Leon van Leeuwen: Wow. Okay.

Health Hats: HANYS was an excellent organization. I learned a lot.

Health Hats: I often get in trouble with my jobs because I am outspoken and question things. I don’t suffer gladly.  After a few years at HANYS, the Healthcare Association of New York State, I had some difficulties with my bosses. While working at HANYS, I became the president of the Northeast New York Quality Assurance Association (NEQA), a group of regional quality management professionals.

Leon van Leeuwen: Wow.

Health Hats: One day, I had breakfast with my Association leadership team, and somebody said, oh, I heard you’ve applied for a job at Value Behavioral Health (VBH). I asked what Value Behavioral Health is and what the job was.  Because it wasn’t me, it sounded interesting, and I struggled in my current job. I called VBH, and they said we’ve done our interviewing and will decide tomorrow, but we’ll give you an interview tomorrow morning.

Leon van Leeuwen: Wow. Okay.

Health Hats: It was my first video interview with my now friend, Luc Pelletier, the VP of Quality for Value Behavioral Health (VBH), and Jim Bulger, the Executive Director of the Troy, NY, regional office. I got the job.  In two weeks, I was on to this new job.

Leon van Leeuwen: You moved around a lot in what you were doing.  Do you know why they thought that you applied there? It seems an incredible twist of fate that you applied there.

Health Hats: Another tough job. I learned a lot from Jim Bulger, my best boss. I had been working at VBH for a month or two. I was having what they called open issues, which is a supervisory meeting with the boss. He wanted to know about new employees’ experiences during their first 30 days because they had yet to be acculturated into the organization.  He asked: newbie, what do you think?   I don’t know what came over me, but I said, frankly, I don’t think we are moving at the pace you want us to.  He said: so, what do you think we need to do? I said I think we need to start with you.  When it came out of my mouth, I was like, oh my God, I can’t believe I said that.

Leon van Leeuwen: That’s very bold.

Health Hats: He responded, okay, every day I am in town, we’ll both come in at 7:30, and you have half an hour to help me figure out what to do.

Leon van Leeuwen: Wow.

Health Hats: We met and did excellent work together. We set up a provider advisory panel and a member advisory panel.  We figured out that the biggest annoyance of both groups was the preauthorization of visits. If a counselor, psychologist, or psychiatrist wanted to treat someone, getting approval for visits is laborious. Your mom is familiar with this.

Leon van Leeuwen: Yeah.

Health Hats: We did a financial analysis and decided to give clinicians seven visits without a preauthorization review. Radical at the time, still unusual now.

Leon van Leeuwen: Yeah.

Health Hats: If you asked for them, you could have the visits. Then, you would have had to justify needing more. But it saved the company money because we needed less time on the phone dealing with all these requests for authorization and denial appeals.

When we became close friends, I asked him why he responded to me like that.  He said I hired you and would be an idiot if I don’t listen to you. I found myself saying that several times to someone on my team. I didn’t really hear their recommendation, so I stopped, thought about Jim Bulger, and followed their lead.

Leon van Leeuwen: Wow. Yeah, that sounds like a great boss.

Leon van Leeuwen: You eventually went somewhere else.

Health Hats: Another four or five jobs.

Leon van Leeuwen: It sounds like you loved it; you had to leave?

Health Hats: A company called Options bought Value Behavioral Health and the merger became Value Options, a different culture. I couldn’t stand it.

Leon van Leeuwen: Oh.

Health Hats: Then I got a job in Cooperstown, NY, the home of the Baseball Hall of Fame, at Bassett Healthcare, a rural health system. I was hired there as Director of Performance Management.  That didn’t last long. A couple of years later, they wanted to lay off my staff, and I said no, you’re crazy to lay off my staff.  It would be best if you lay me off. They do the work. So, they did.

Leon van Leeuwen: Wow. So, what was your last nursing job?

Health Hats: If you say nursing, meaning direct care rather than management, that was in the ICU at Stonewall Jackson Hospital.

Leon van Leeuwen: OK, what was your last job before you retired?

Health Hats: I worked at Advocates Inc., an organization that supported about 23,000 people with disabilities, as the Vice President of Quality.

Leon van Leeuwen: Wow.

Health Hats: After that, I retired.

Leon van Leeuwen: I might be misremembering, but when I was a kid, I heard something about you getting fired from that job.  How did that happen?

Health Hats: When I arrived at Advocates, Inc., it acted like a mom-and-pop startup organization growing in size and budget before I arrived. I was the first person hired into the C-suite (from the outside, meaning the other senior leaders had worked at Advocates, Inc. for years). Early in my tenure, I observed, that if you want quality, you must have an infrastructure to manage a group as big as you – policies and structure. Too soon, perhaps – I rubbed people the wrong way. In many ways, Advocates excelled. Its motto, First We Listen, is a well-reflected reality. I learned a ton – especially about supporting people with disabilities and including people receiving services in all levels of governance and operations. I still contribute monthly to them as they do excellent work for the community, and want to support them. I didn’t have the best experience at the end. I should have left sooner. But I didn’t. They didn’t officially fire me. It was mutual.  They would’ve fired me if we hadn’t had a mutual agreement for me to leave.

Leon van Leeuwen: Yeah. So, how long did you retire until you started your blog?

Health Hats: Oh, I started a blog before.

Leon van Leeuwen: Wow.

Health Hats:  That was part of why they wanted to fire me. I was committed to my job, but that wasn’t my entire professional life.

Leon van Leeuwen: You wanted to do something other than that.

Health Hats: I was becoming a patient-caregiver activist. Their practice was for people in the C-suite to be on call 24 hours a day, 365 days a year.  I said, come on, we’re adults here. We can figure out how to cover each other so people can have time off.

Leon van Leeuwen: You wanted more time when you decided to go to nursing school instead of med school. It’s interesting that you still held that up.

Health Hats: Yes. Thank you. I’ve been very blessed.

Before Advocates, I worked for four to five years at Boston Children’s Hospital, leading their Patient Experience Initiative, another excellent job. I worked with wonderful people.

Leon van Leeuwen: Wow.  You’ve had quite the journey to get to where you are and have had many jobs in many fields.

Health Hats: When I got hired at Children’s and introduced to the clinic managers, one of them said, oh, you can’t keep a job, can you?

Leon van Leeuwen: It’s all different positions, too. That was great. That was interesting. Thank you.

Health Hats: Yes, thank you.   It’s excellent to have this conversation with you.  Thank you for being a part of my podcasting team editing the audio transcript for readers.  Thank you for all the work you do.

Leon van Leeuwen: Thank you for giving me the opportunity and paying me. I appreciate it.

Health Hats: Right, honey, I love you.

Leon van Leeuwen: I love you too.

Image by Blake Meyer on Unsplash

Two jobs in my youth stand out: selling coffee and donuts to workers at 12 and draft counseling at 16.  I started a summer coffee and donut business. My mother loaned me money to buy a PF Flyer Wagon and the first batch of ground coffee, donuts, cups, and utensils. Our Unitarian Church loaned me a large coffee maker. I served workers building my new local school.

My first pro bono job was at 16 when I learned to draft counsel young men seeking to manage the draft or home on leave from Vietnam trying to get out. My goal was to manage my impending draft. When I went to a downtown Detroit church for counseling, the program director suggested I learn to be a counselor myself. I did. I learned the critical skill of profound knowledge of regulations to better serve people making critical decisions and managing their lives.

Two other milestones come to mind: I led the implementation of an integrated electronic health record (EHR) for an addiction treatment provider that also managed behavioral benefits for a local insurance provider. I had never done anything previously with EHRs, tech data, medical records, or apps. I learned to stubbornly insist on core data set cleansing before implementation and the benefits and challenges of a cross-functional stakeholder steering committee. Thanks to one of my best bosses and friends, the late Robert Doherty, and a friend and colleague, June Richardson, for the opportunity.

I don’t believe in bucket lists much, so I’ve only had a few things on that list.

Book referencing Danny’s work with citation

OK, my followers and subscribers who ask me for more about me, Tada! I feel spent. Thanks, Leon, for stirring this up. I’m so proud of you!

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band.

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it with one person. See you around the block.

Related episodes from Health Hats

https://health-hats.com/pod215/

https://health-hats.com/pod206/

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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)

Kathleen Noonan’s quest to build bridges between communities & researchers with long-term relationships & respect for experience & expertise, just like juries.

Summary

Kathleen Noonan, the CEO, catalyzed the transformation of the Camden Coalition into a national platform for complex care. She focused on capacity building, bridging healthcare research with community organizations, and emphasizing the power of diverse partnerships. Noonan is a staunch advocate for community-driven healthcare, pushing institutions to incorporate local insights and foster long-term relationships that shape better research and policy outcomes.

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

Two five-minute clips on YouTube.

Contents

Table of Contents

• Episode
  • • Proem
    • Podcast intro
    • The fragility of health
    • Journey to healthcare advocacy
    • Insights from the legal and corporate worlds
    • Transition to Children’s Policy and Healthcare
    • First encounter with Camden Coalition
    • The impact of diversity at conferences
    • Meeting of the minds over community – research interfaces
    • An outsider co-directing a Research Center
    • Implementation, a different animal altogether
    • Who asks the research questions?
    • Partnering in the community
    • Earning the right to speak
    • Full of myself
    •  Call to action
    • Punching above our weight class
    • From a local to a national organization
    • Complex care center
    • Community Nursing in 1976 – Walking Inner City route.
    • Capacity to partner
    • Long-term relationships, lean into expertise.
    • Mediation
    • Messy and local
    • Community participation in research – capacity building
    • Start with the research questions asked
    • Long-term relationships informed consumers and researchers
    • Consider juries as an effective, diverse set of minds
    • Expertise versus credentials
    • Reflection
    • Podcast Outro
    • Please comment and ask questions:

In 2020, early in the COVID pandemic, I joined with several colleagues asking the questions:

How can the research industry help laypeople and communities find evidence-based guidance on how to live safely? Guidance that answers their questions when needed? Guidance that feels familiar and helpful. Guidance they trust. How can we be inclusive of our communities’ awesome diversity? See the podcast episode here.

We spent several years exploring those questions, informing my passion for community-research partnerships. I highlight such partnerships as often as possible in my podcast. One of my primary advocacy goals is to promote research that answers questions the public and communities ask.

My guest today, Kathleen Noonan, is CEO of the Camden Coalition, a multidisciplinary, community-based nonprofit working to improve care for people with complex health and social needs in Camden, across New Jersey, and nationwide. They develop and test care management models and redesign systems in partnership with consumers, community members, health systems, community-based organizations, government agencies, payers, and more to achieve person-centered, equitable care.

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

Health Hats: Kathleen, thank you so much for joining us. I’ve been looking forward to this. When did you first realize health was fragile?

Kathleen Noonan: That’s a great question. There are so many different answers to that. At some point as a kid, you realize that your parents aren’t just older than you, but older adults don’t stay around. When I was a kid, there was a girl on my block who passed away from pneumonia. It was an early developmental moment. But then, when did you realize that health is fragile because the healthcare system is so fragmented? It is another whole thing. When did I realize that we make our health more fragile because of the system we’ve built?

Health Hats: Tell us about the Camden Coalition and your path to becoming CEO of the Camden Coalition.

Kathleen Noonan: I didn’t expect to find myself in healthcare as a 20-year-old or even a 30-year-old. I started out doing children’s advocacy work after college. I was a lobbyist for a children’s advocacy organization in New York City and greatly cared about economic benefits. Some might call it economic justice now, but it was things like earned income tax credits and better wages back then. Those were not the issues I worked on. You get what you get In the children’s advocacy organization. I worked on early childhood and issues of the crack and AIDS epidemic in New York City. I learned much about government and governance, state and local roles, and the federal government’s roles.

Kathleen Noonan: I went to law school and paid off my debt by working as a corporate lawyer, which was not a terrible experience. I always tell people that one of the great things about the lawyers I worked with was that they were open to two sides of a story. And I sometimes find that many people are not open to two sides, even in my peer groups.

Health Hats: If not 10.

 Kathleen Noonan: Exactly. You’re so right about that. That is part of our issue. I love that these lawyers were very open to the fact that I was there to pay off my debts and would go and do something else, which I did.

Image by Tim Mossholder on Unsplash

Kathleen Noonan: Next, I engaged in many children’s policy work – child welfare, mental health, and juvenile justice. When I landed at the Children’s Hospital in Philadelphia (CHOP), I wondered what I was doing there. Then I spent ten years learning about healthcare and learned, oh my Lord, this system is very broken.

Health Hats: My first experience with the Camden Coalition was at last year’s annual conference. Our mutual friend, Janice Tufte, encouraged me to participate for five years, and I just kept blowing her off. I was involved in so much and didn’t need anything else on my plate. Then Janice called me and said the conference will be in Boston this year. There’s a beehive that sounds right up your alley, so I went.  It was terrific.

Image by conference attendee

Health Hats: I was in awe of that. What was there? 600, 650 attendees. This was not a small conference. The attendees were young, and I pegged the average age to be 35. I made that up, but it wasn’t 60 like many conferences, and it wasn’t 12. It was a diverse audience—visibly diverse (skin color and mobility)—some newbies their employers sponsored to learn more and veterans. Veterans meant people with around ten years of experience in their organization – deep and narrow expertise, whether the unhoused or victims of violence or transportation. They were excited about what they could accomplish. I was fascinated.

Health Hats: When we spoke recently, we found commonality in the community-research interface. The community service business and the research industrial complex have different skills. I’m in the PCORI (Patient-Centered Outcomes Institute) world, where people are committed to investing in community research interfaces. I’m now wondering about your perspective and experience in the service, advocacy, and lobbying world with the Camden Coalition. What’s your experience?

Image of David Rubin, MD from https://www.research.chop.edu/people/david-rubin

Kathleen Noonan: I went to the Children’s Hospital of Philadelphia (CHOP) to be the co-director of a research center as a lawyer and policy person, not a researcher. I came in as an outsider with an outsider’s perspective. My co-director, a pediatrician researcher, David Rubin, just left CHOP to attend the University of California. He was a researcher working on issues related to under-resourced kids and families. He was frustrated that the research that he was doing wasn’t doing a damn bit of good and was willing to say that out loud, which is something that a lot of researchers aren’t willing to do. So, kudos to him.

Health Hats: He did the research, and he had promising findings.

Kathleen Noonan: Right. The results never hit the front line in policy or program changes at the state, local, or federal government level and weren’t influential in his system. If you are at a children’s hospital researching kids in the child welfare system or the public school system in a place like Philadelphia, your research is not at the top of your mind.

Shout out to Dave Rubin again. Dave, you can thank me when I see you. He was not aggrieved but asked what we could do differently. What can I do with the levers I do have? To CHOP’s credit, they funded us to start a research center. They allowed us to use those funds to think about communication and policy differently so that we could use influence levers differently. I learned a lot about research. To answer your earlier question, I learned how long it took and how siloed it was from research to policy and vice versa.

Image by Rohit Farmer on Unsplash

Kathleen Noonan: The questions researchers wanted to answer were not necessarily those that policymakers, community members, or parents wanted answered. It was essential to spend time thinking about those things together. We also had to spend more time talking to policymakers and programs to do relevant research.

Kathleen Noonan: More recently, Policy Lab has done a great job partnering with community organizations. But we had to get outside the hospital. We would not expect people to come to us if we wanted to do this work. We had to go to them.

Health Hats: You had to identify community organizations that were potential partners and go there.

Kathleen Noonan: Yes. Earlier in Policy Lab’s history – history because it just had its 15th anniversary – we focused on program and policy levers. I started to partner with organizations and community organizations. They have a more robust program with an earlier goal: community partnership.

Health Hats: About policy or with legislators, council people, and another provider?

Kathleen Noonan: Administrators, other provider organizations. When we received funding for a program, we looked at a new way to treat children and adults with acting-out issues and adults with anger management issues. They need a little help to live together better. We said we’re not going to do this at CHOP. We will find community-based organizations that want to provide this service and do the project at their site, not at CHOP. But go out to community-based organizations and find them to do the programs with. So, we started that way.

At Policy Lab, resourced by the Children’s Hospital of Philadelphia, had communications staff and policy team members who were team members with the researchers. Researchers in a hospital are often clinicians, too. A person working on the research methods might be skilled at facilitation, communications, and policy. They are the ones who are going to go out and meet with community partners. Both come to the team with their expertise. I remember a staff person like this attending a community meeting, and we hadn’t been to these community meetings in West Philadelphia in a long

Image from the Noun Project

time. And she asked me what I thought she should say at the meeting or what do should she do. I said we haven’t earned the right to speak in these meetings yet. We’re not going to say anything. Please introduce yourself, but I don’t think we have earned the right to say anything. Why don’t we go to some meetings and listen to what they say and think about what we have to say in a few months? I think you also have to go in with that attitude.

Health Hats: It took my whole career to learn that. It’s a side effect of being full of yourself. Yes, I have strong arrogance muscles.

Kathleen Noonan: I get you. It’s not bad. You must learn to temper it and say, I’m sorry when there’s been too much. I get it.

I now have one URL for all things Health Hats. https://linktr.ee/healthhats to subscribe for free or with 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, and commenting makes quite an impact. Thank you.

Image from Openart.ai

Health Hats: You’re at the Camden Coalition, which differs significantly from CHOP.

Kathleen Noonan: Yes. I love it. We’re about 80 people. We are small but mighty, and we punch above our weight class. I spent my last two and a half years at CHOP in the C-suite and learned much about hospitals, how they operate, and what they can do well. They certainly can do many things well. Many kids and families are getting the care they need, but I also had a good sense of what they didn’t do well and what they needed community partners for. The Camden Coalition provided this opportunity to go on into the community-based side of it and say, okay, what? It also allowed me to work with a partnership, a coalition of hospitals, community-based organizations, and community residents. I have four of my trustees from my community advisory committee. I have another trustee who’s a consumer advocate. There’s just a coming together of a diverse group, and that was a different experience than I had at CHOP.

Health Hats: The Camden Coalition is a local and national organization.

Kathleen Noonan: We started as a local organization because Jeff Brenner, our founder, was a physician who, very much like Dave Rubin, was frustrated that his work wasn’t doing a damn bit of good. That seems to be the Theme. I guess the next job I’ll get will be a doctor who comes to me and says, I feel like my work isn’t doing much good. Jeff Brenner, within the Cooper Medical System, created this model of the nurse, the social worker, and the community health worker leaving the hospital, right? That’s important – seeing clients where they were, as well as the most complex clients, with medical and social complexity. So, we did that, and we were fortunate because I know all too well that thousands of community-based organizations, such as the Camden Coalition, are doing incredible work. The fact that Atul Gawande singled us out in a New Yorker article is luck to some extent. I believe that we hold that with a lot of humility here. It allowed us to have a national point of view, which is not typical for a community-based organization. And I say again, these community-based organizations have little power, so we must use it wisely, be generous, and share it.

Through that, we started talking to other groups around the country doing the kinds of things we were doing. They were often ahead of us. We developed the idea of bringing people together in a sort of home for the field of complex care with the Robert Wood Johnson Foundation and AARP.

We built this national center and the conference you attended, and we wanted it to be different from the academic medical conferences I attended for ten years. I wanted it to be a little bit of that, but I didn’t want it to be all. I wanted it to be a little bit of the children’s advocacy convenings I went to in New York City, which was, sometimes, with Act Up in the room because it was the time of the AIDS crisis. Sometimes, family daycare providers filled the room. We spent much time considering the diversity of voices. You saw that in Boston. We continue to get support from the Robert Wood Johnson Foundation to have a national center here, too. Push out information about the field of complex care. We teach and train. We just launched a new certificate on complex care, which we hope will allow other providers to bring the diverse teams working on complex care into their program or institution, or even across programs, and for people to learn and learn together and skill up together. Watch a video about the certificate here or in the episode show notes.

Article from the Holyoke Transcript-Telegram Aug 19,1977

Health Hats: Oh, I wish I had known this a long time ago. My first professional nursing job was 1976 as the first male public health nurse in Western Massachusetts. I got hired by the Holyoke Visiting Nurses Association because they were dying to hire a guy. I was a brand-new nurse. Usually, you get into home care after years in hospital nursing. I was fortunate that that was my first professional job. I ended up quickly having an inner-city walking route, and part of that was because the women didn’t want to be in the inner city. I didn’t want to drive all the time, so I said, instead of paying me gas money, buy me shoes and a backpack, and I’ll do the inner city. It was a great way to start a profession because I was out there, and it was, even all these walk-ups and people lived in some oh man, dank and dark and, and having, whether it was diabetes or paralysis and bedsores from gunshot wounds. I had good thoughts, but they were brand new, and I mostly didn’t know. I can only come to your community once a week to help you. But it would be best if you had something every day. That stuff was not organized. I operated by the seat of my pants.

Health Hats: But this business is about the capacity to partner. I want to be more involved with the communities and have co-PIs from the community. That’s not them. That’s not what they know. We want them to disseminate their results to communities and help implement them. Where’s the money going to come from?

What happens when the funding cycle ends? The problem lasts forever. When you have a problem, you must go to the people on the front line because when I was a consultant, it was a dirty secret. People would pay you to come to solve some problem. And how do you solve it? You talk to the people who work there, and they know. They’ll listen to me for a few minutes since they’re paying me a lot. I probably didn’t have an original thought; I was just a good mouthpiece. How do you balance that tension?

Image from OpenArt

Kathleen Noonan: We see a lot of requests about community participation, which seems a little unrealistic to us. I’ll put it that way. The idea is that some people are just waiting to be asked to be a co-PI, or are just waiting to learn about methods, or even signing off on your methods, which is infinitesimal. Are they right? Is it a rubber stamp? Ask them to sign off on whether they think the question is excellent, like where they have expertise. Please give them the sign-off on that. Is that as a co-PI? I don’t know. Is that just calling someone a co-director? But they’re not. You’re somebody who is the director. It just feels like it can feel not credible. We don’t want to tokenize people in any way and worry about just our own what we are not seeing or knowing about how we’re operating. But we believe in it. Longer-term relationships with consumer advocates and community members, so you know them and what they’re interested in influencing. Why are they bringing in? If they’re bringing their story, why are they bringing their story? Why are they willing to share their story if they are to advance a policy issue or a program issue? And what policy and program issues do they want to advance to change? And then what’s our responsibility to work with them to think about the change and whether they sign off on it?

Our community advisory committee is a group of people, some of whom I’ve known for years. I’ve known since I started at the Coalition six years ago. When I came to the Coalition, the community advisory committee was very upset with the Coalition about something. I trained as a mediator, so I had mediation to do that. Just recently, I had to do mediation within the community advisory committee because we have people who have very different points of view about drug use. We have someone who believes and several people who believe that you’re not sober if you are not using heroin but you’re smoking weed. And we have some people who believe that they’re sober and they can call themselves clean if they are not shooting up but smoking weed. When I hear researchers talk about the things I want to do, I want to be able to train myself. You must have some training or somebody on your team who understands the life conflicts that may arise when you ask people in this field to work with you on a substance.

Health Hats: Local work is challenging, messy, and local.

Kathleen Noonan: Absolutely. That’s why I love local work. It’s why I started in children’s advocacy locally, and I love local. It works, but it is very messy.

Kathleen Noonan: You figured out how to have community-based organizations participate in research. I’ll tell you, here’s an example for research funders to think about. We just saw a call for proposals for RCTs (Randomized Control Trials). We want to do another, maybe three or four years from now. We’ve done one RTC. Do you want to do one again? We had lots of intramural money when I was at the Children’s Hospital of Philadelphia. Researchers could use the money as a rainy-day fund or a cookie jar. Researchers could request funds from those sources to prepare to apply for a research grant. We don’t have it at all. We want to send something to this request for proposals for randomized control trial funds and say we need them to prepare for a randomized control trial. That’s what you would have to do with community-based organizations, which is, say, we’re going to fund them for two to three years to get ready to do a project or to get ready to partner.

Health Hats: I can weigh how big that PCORI capacity-building bucket is. It’s a very effective bucket. Before becoming a board member, I worked on a project funded for building capacity in Boston. The paid facilitators were good. They worked hard to build a partnership with researchers and other collaborators. I was fascinated to see it from that perspective. I agree with you. As a PCORI Merit Reviewer, I observed that academic Applications were $5 less than the max. When communities led funding applications, the question was whether they could afford to do it on that budget. Because it didn’t seem like they were asking for enough – a fascinating dilemma. Could the funds go to people who aren’t going to ask for every dollar? Then, you can do more projects. On the other hand, do they have the expertise? They don’t. They’re not paying the overhead; academics have a significant overhead, but that’s not the issue.

Kathleen Noonan: I think it’s interesting, though. Interestingly, the Affordable Care Act and other healthcare mechanisms indeed hold. Payers’ health insurance companies have a 20% overhead, but we allow universities to take 60%, so there is a disparity. It’s tough to understand.

Image by Camylla Battani on Unsplash

Health Hats: So, if you were thinking out of this conversation about this partnering between researchers and communities, what do you think are the most critical points in your experience? What should our listeners be thinking about?

Kathleen Noonan: Researchers usually use questions they’re interested in as a starting point, but if you want to do community-informed research, you must go out and talk to people and ask if this descriptive research is fascinating. Or is this a question you know more people than I and peer-reviewed journals would be interested in?

Kathleen Noonan: I think that’s important. If researchers haven’t asked it, then justify why and have enough of a relationship with them to bring it to them in earnest, and they come around and decide with you. That’s a good question. You’ve already done a great project right there. I think that’s important. I think it’s essential for researchers to have long-term relationships with Consumer Advocates. These are not one-time relationships but relationships where they become educated consumers.

Image of jury from www.rtbf.be

Kathleen Noonan: We trust, in our country, that a jury can come together without law degrees, listen to much information, and come to a reasonable conclusion. I worked in the court for two years as a law clerk, and I never found the jury to come back with a decision I disagreed with. You can bring a diverse set of minds together. Like a lot of them, even my board has consumer advocates. They don’t know everything but provide some accountability for what we do together. Suppose you commit to some consumer advocates over time. In that case, they will learn a bit about what you’re doing and become more comfortable and experienced in questioning what you’re doing and contributing to it. Think of them as a well-rounded jury. They tell you whether this is a good idea or not. That’s how we try to think about it in the longer term. It’s essential to build longer-term relationships. I do not expect to have this study; I will go out and find somebody.

Health Hats: What is the consumer’s point of view?

Kathleen Noonan: I don’t want to speak from that point of view per se. I wish I had one of my community advisors here with me. But I will say this: our community advisory committee was vital when we worked on Covid and were all in Covid in Camden. And we created a community ambassador program. And we did that actually because of the states. The state said they would make contact tracing jobs available to people regardless of educational status. Then, they gave the contract to our big state university, which required a BA degree. A couple of our community advisory committee members were so disappointed because they would have applied. So, we said, do not worry about it. We are creating a new position for you. We created this ambassador position, and they were paid to knock door to door and go to different places.

However, one of the things that I learned was that we shared the research studies with them. We talked about the research with them. They needed to be as educated as possible. So that they felt perfect about saying to people like, no, I looked at the research study. There were African Americans in the study, right? They understood some of the concerns and could say to people with a lot of credibility that’s not true. So, we must give community members more credit than they might sometimes get.

Health Hats: Thank you.

Kathleen Noonan: Thank you.

This conversation hit many of my priorities. Of course, I value promoting capacity for community-research partnerships through long-term relationships. I also prize serving emerging advocates where they hang out, and respecting expertise and experience as co-equal to credentials. What a hoot to dig up the 1977 article about my naïve, prescient, 25-year-old self.

I’m going to steal Kathleen’s jury metaphor. A jury can come together without law degrees, listen to much information, and come to a reasonable conclusion. You bring a diverse set of minds together. They don’t know everything, but together, they help and provide some accountability for our actions.

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band.

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. Links in the show notes. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Production Team

Credits

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies.   As mentioned in the podcast: drink water, love hard, fight racism

Inspired by and Grateful to 

Rodney Elliot, Eric Kettering, Nakela Cook, Lisa Stewart, Kristin Carmen, Janice Tufte, Alexis Snyder

Links and references

Camden Coalition

Annual Conference

Atul Gawande’s New Yorker article

Jeff Brenner

David Rubin

CHOP Children’s Hospital of Philadelphia Policy Lab

Act Up

Robert Wood Johnson Foundation

Janice Tufte Hassanah Consulting

PCORI (Patient-Centered Outcomes Institute) 

PCORI Merit Reviewer,

1977 article about Danny van Leeuwen first male public health nurse in W Mass

Related episodes from Health Hats

https://health-hats.com/safe-living-in-a-pandemic-help/

https://health-hats.com/pod204/

https://health-hats.com/pod205/

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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)

Exploring the journey of coffee from farm to cup with expert Jen Stone, delving into flavors, cupping, & the ethics of coffee production. Music & Health, too

Full 36-min episode on YouTube

Two five-minute clips on YouTube.

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Contents

Table of Contents

• Episode
  • • Proem
    • Podcast intro
    • Introducing Jennifer Stone
    • Health is Fragile
    • Profound Knowledge of Coffee or Caffeine
    • Caffeine Delivery System
    • Coffee Cupper
    • Coffee Flavor Notes
    •  Call to action
    • Coffee Flavor Notes in My Cuppa
    • Different tastes and circumstances
    • Fermentation
    • Transparency
    • Social Justice in Coffee Making
    • My Palette
    • Slow down and taste
    • You’ve ruined me a bit
    • Equipment
    • Reflection
    • Podcast Outro
    • Please comment and ask questions:

When I take two minutes to bitch about the annoyances of having Multiple Sclerosis, I insist that I can’t be repetitive. I must whine and complain with new words. How many words do we have for describing symptoms of pain? Not enough. Sharp, dull, achy, daily, itchy radiating, nauseating, disabling.

Greenland has 46 words for snow and no wonder. Profound knowledge about something leads to more words being needed and created. The better we can describe ourselves to ourselves, the deeper we understand our nuances. More accurate and specific descriptions lead to better communication of our symptoms, moods, and circumstances with our health team. Then, we can make informed decisions, plan, and adjust together.

Believe it or not, this rant about words leads us to today’s episode on coffee. Welcome to my new hat – coffee snob. Our guest is Jennifer Stone, my colleague in my Thursday morning mastermind group for solo entrepreneurs. Jen is a Sommelier of Coffee and the host of the Coffee Explorer Podcast, a Quality Lecturer, and a Licensed Q Grader by the Coffee Quality Institute. She is internationally recognized as an Expert Coffee Taster and Judge for the Cup of Excellence. She has expertise in finding, sourcing, and sharing remarkable coffees from quality global producers. Over her career, she’s opened multiple cafes and created several direct-to-consumer and business-to-business specialty coffee brands. She provided expertise to others in these areas and is always excited to share the best ways to brew coffee with the market. Jen Stone has opened my eyes in unexpected ways. Drink up!

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

Health Hats: Jen, you’ve opened many senses for me. We met over the business. We are working together on our business; you know how that’s growing and managing. But I’ve learned from you about coffee, not just coffee.

It’s about the sense of taste because it’s not just, you know, while I’m learning to appreciate fine coffee. I was concentrating more on what was happening in my mouth. I’m finding it with food, chocolate, and alcohol, and just more awareness.

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

Jennifer Stone: This is such an interesting question. I love that you asked about the word health as fragile and not life as fragile. When a loved one passes, or you have a near-death experience, that speaks about life, but health, specifically, is a little vaguer. About a year and a half ago, I could say I loved to run. I’m not fast, but I love to jog and exercise. One of my knee joints began to wear down. I have some arthritis in one of my knees, and it felt like this bone-on-bone thing. It was disabling. After a few days of it not going away, no matter how much ibuprofen I took, I realized I needed my knee to strengthen. I don’t want to focus on my knee. I had a dog who needed to run outside quickly occasionally. And I need to be able to take care of my family and go to the grocery. My job requires me to go through airports, make presentations, and stand and walk. It’s a privileged framework, but I have always been ridiculously healthy. Thank God I have had my health, so I’m sensitive to anything glitchy. It was frustrating, and I realized that that little thing could impact my life, much less something larger.

Health Hats: So, how does coffee fit into that? There are so many levels. I describe you as a coffee maven, and I don’t know what that means, but I think you’re a coffee expert. Maven sounds cooler. It impresses me that one of the things that I know about health is that a profound understanding of something is helpful. The more you understand, like you’re talking about your knee and you’re running, the more you understand what’s happening to your knee, the more you can manage your overall health.

You’re a coffee expert. You understand the coffee process profoundly. So, is there a health piece to that? The only thing I ever hear about coffee and health is about caffeine. Dark coffee doesn’t have any caffeine, but decaffeinated coffee has more. Does caffeine make any difference? Is that part of your expertise?

Jennifer Stone: I am highly aware of that because, as with any industry, health or culinary, it’s very whimsical. You’re only as informed as the following article about coffee, health, cheese, or butter or how much walking you should do versus how much weight you should do. I am aware of it. I have some thoughts about coffee and health: The net-net is what we must distinguish. Are we talking about caffeine or coffee?

Health Hats: Okay, go for it.

Jennifer Stone: Coffee is a very effective caffeine delivery system. Everybody probably has a loose awareness of their caffeine or coffee limits. We can push those occasionally, but we keep everything in moderation. Technically, coffee is a plant. Coffee is a fruit, a seed of a fruit. It’s full of antioxidants. I’m not going to list them. It’s full of things that are good for you. Because we’re sipping it slowly over maybe 20, 30-minute the delivery system is effective, especially with drip coffee. I say two things about that. One is it’s a good cup of coffee – you and I have talked about this – that moment happens, time slowing. I love that you used it, and I’ve written it down: that sense of taste. Can it transmute to a sense of place and that moment of drinking or brewing a nice cup of coffee?

Be it caffeinated, decaffeinated, or otherwise. Good coffee brewed well is the starting point for that experience. Coffee has also become a delivery system for additives like cream and sugar. That’s a choice. Is this the way I’m going to have sugar today? Milk? Now, we’re adding unflavored collagen to coffee.

Health Hats: Wait a minute. Say that again when you say collagen. That caught my attention.

Jennifer Stone: So, there are, for example, vital proteins. This collagen has peptides that are highly dissolvable. It doesn’t taste like anything.

Health Hats: Oh. You were talking about additives. Okay. Thank you.

Jennifer Stone: People add a range of things to their coffee that may or may not be beneficial for their health.

Health Hats:  The whole process is so interesting. You tend to work with specific growers, roasters, and vendors. How do you choose them? You’re not looking at instant coffee. You do all this work for us. What’s that about?

Jennifer Stone: That is such a great question. Over the years, I’ve developed my expertise and my experience in coffee. People tell me I am an excellent cupper, which means I’m a good person who tastes coffee and assesses coffee quality. I have a designation by the Coffee Quality Institute as a quality grader. And so, a framework for tasting coffee is an international language, a common language for assessing the coffee quality that a small group can use. So, I use that point system framework. Does this coffee score high on acidity, brightness, flavor, aftertaste, or other things? We want to eliminate things with negative attributes, like whether they are sour or taste like a band-aid.

Health Hats: Or burnt.

Figure 1: From https://millilitre.my/good-reads/basic-coffee-tasting-wheel-and-how-to/

Jennifer Stone: I’m looking for harmonious flavor and complexity when thinking about coffee. I love it when I can taste a chocolate note or a milk chocolate note, specifically maybe pumpkin spice or a baking spice in the coffee; that is when I can detect a few different flavor notes. I think you could detect anyone who enjoys drinking coffee, and then I think it is a coffee that most people will want to taste and try. So that’s what I’m looking for. And then with my, you know, years of network and relationships and new things happening in coffee all the time, you know, I look. I seek those coffees out from producers. I find out what they’re doing at the farm, too. To make their coffees taste so good, and that’s research. You must kiss a lot of frogs.

I now have one URL for all things Health Hats. https://linktr.ee/healthhats to subscribe for free or with 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, and commenting makes quite an impact. Thank you.

Health Hats: I’ve got my cuppa and the label, and I’m thinking about what this says here. Taste of watermelon candy. Tropical tea, strawberry anaerobic fermentation. Natural process.

Jennifer Stone: Yes.

Health Hats: Relevant Reserve Coffee, Columbia, Adrian Lasso, pink Bourbon. It’s amazing.

Jennifer Stone: Do you love it?

Health Hats: I do. It’s intriguing, and it’s not something that I’m going to drink routinely. I’m drinking it now because I knew I would be on the phone with you. It’s a coffee that makes you want to think, so much think as taste. What is this? Never read watermelon candy, tropical tea, or strawberry. I’m always amazed at how that goes. Where do those descriptions come from?

Jennifer Stone: We have the advantage of being in the lovely vacuum of the cupping table, tasting that coffee in a tranquil, controlled atmosphere with our worksheets in front of us. We are specifically looking to find those flavors of the acids, the fruits. We seek out fruits. And we are looking for the level of body or the mouth fill. So again, in that vacuum, we can say words like watermelon and candy. The notes I had hit out of the park with those sweet, fruity notes; I found things like peppercorn, and I found it to be very buttery in terms of texture. And so, with wine tasting, you must train your mind to think about these specific notes, but part of the adventure.

Health Hats: It’s like music.

Jennifer Stone: Yes, it is.  This coffee is not something you want to drink daily. It’s not something I even want to drink every day, but I love that so much artwork went into producing this coffee by Adrian Lasso. It was a very controlled experiment with a lot he had to discard because of the controlled fermentation you must do to make coffee taste this good and sweet. Otherwise, it could taste not good. It’s an art form.

I don’t want every coffee to be like this: It’s not a gateway coffee. I gave some to my mother, who doesn’t drink much coffee. She doesn’t drink caffeine. She didn’t like it. We have a friend in common, Seth Godin. I sent him a similar coffee. he roasts coffee., I gave him some green coffee that had a similar process, and he roasted it and didn’t love it at all. Even the smell is very peaty. I think that’s okay. It opened my eyes because even though it’s the highest quality coffee, and maybe it scores like a 98, it doesn’t mean you’ll like it even if someone says it’s the best.

Health Hats: What does fermentation have to do with making coffee? This isn’t like liquor.

Jennifer Stone: Some crossovers are happening to make the coffee taste a certain way. As a fruit, coffee cherries, that’s what we call them, look like cranberries, except they’ve got these two seeds in the middle that face each other like this. is where it becomes. There are various ways to remove that cherry from those seeds and allow fermentation with some pulp on the seed. That imparts those pulpy flavors to the bean significantly. People even add cinnamon when the coffee cherry must be fermented or washed off. That results in flavored coffee beans versus flavoring agents added after the roasters roast the coffee.

Health Hats: Oh, so people add stuff afterward.

Jennifer Stone: Yeah, and if you love it, you love it. I don’t judge. It’s a fantastic way to have a high-quality coffee, but if you enjoy the taste of it, you know, at Christmas, then.

Health Hats: Looking at a label, how would you know whether the watermelon, whatever, came from the bean itself or somebody added a drop of watermelon flavor to it?

Jennifer Stone: That is a good question. Today’s Roasters have become more transparent about saying we did this at the farm, and it tastes like watermelon. High-quality roasters will not use flavoring agents because they are harsh, like polypropylene glycol, just powders and things you would add after roasting, creating Snickerdoodle.

A view of a field of coffee plants

Figure 4: Image from https://www.torchcoffee.asia/resources

Health Hats: One of the things I found interesting, especially after I went to a Costa Rican coffee farm in Alajuela. I came back full of questions. With luxury goods, it’s usually the people at the beginning who get screwed in the process. Something is high-end, and there’s a lot of charge, and it’s like people who didn’t do the work are making the money. And I remember you talking a little about how you go around, and when you travel and go to farms, you’re selective about how you choose the farms you want to work with. So, is there a social justice piece to this?

Jennifer Stone: That’s as fine a word as any. Coffee is a third-world product, generally grown in a band near the equator, encompassing countries like Honduras and El Salvador, which are struggling. But also Brazil, Columbia, Indonesia, and Sumatra. And then Africa, maybe Kenya, Ethiopia, and Tanzania, are where you’re producing this penny for a pound of product that has been highly leveraged to stay down like that. When I work with individual farmers who have had some opportunity to get coffee on the map, it could be through different programs, like a Cup of Excellence, which holds auctions in countries anybody could submit. People like me come in, people in the country, come in and taste their coffees and recognize their potential or how good they already are. It allows producers and importers to come in and pay more for those coffees because they want them more.

Health Hats: Coffee isn’t cheap. You go to Starbucks, and I have no idea what’s happened to this costly cup of coffee. But I’ve built a relationship with you where you’re curating the coffee for me, and I sense that you’re paying attention to the whole process.

I’m interested in what you pay attention to with the farmers. The beginning is growing the bean, so what are you looking for? Because your coffee is expensive, but it’s not outrageous by any means. There is way more expensive coffee out there. You sent me that Rwanda coffee, which was a little more expensive. It was worth it. Is the farmer getting more of that?

Jennifer Stone: At the core, I have discovered a correlation between higher quality, better tasting, and hitting all top end of the marks on the cupping sheet. Those farmers tend to take better care of their farms and those who work there; it just goes hand in hand. The farms and the farmers often provide housing. Often, coffee pickers are transient, like in the US, and they’ll move from farm to farm during harvest. But they can receive housing, school, and healthcare, and different aspects of their life are improved because they are in coffee. So that farmer must charge. Moreover, they can charge for their beans if the market is depressed. But we’ve come into an era where we can pay as much as needed for that farmer to have that coffee again next year, and we’re starting to think about sustainability.

Health Hats: Right. Being able to predict your market.

Jennifer Stone: Yeah. Year after year.

Health Hats: I’ve learned much from you in my exploration of coffee over the past few years. I know enough to be dangerous now. I already knew what aftertaste was; how long do you taste something? I have this image in the mind of my tongue and palette, the entire tongue, and the roof of my mouth. It’s been a while since I had a sip, and I can still taste it, mainly on the roof of my mouth and a little bit on the middle of my tongue. I taste the rare coffee on the back of my tongue. I find that interesting when I do, just because it’s different. Then there are coffees you’ve given me that are burst, like pow. You know, as opposed to Hmm.

Jennifer Stone: Like music,

Health Hats: Like cheese, I’m not much of a wine drinker, but I like whiskey. I don’t often like to slow down and taste.

Figure 5: Selfie of Danny and JoJo on Porch

Health Hats: I have been drinking more coffee. My dog likes to sit out on the porch in the morning and sit on my lap, and we watch whatever is going on with a cup of coffee. I’m sitting there with the dog. I can take the time.

Jennifer Stone: Yes.

Health Hats: I don’t like multitasking with my coffee.

Jennifer Stone: Yes. I love that. It is such an exciting idea to experience the coffee aftertaste, finishing in geophysics physiologically. Where in your mouth are you tasting it versus what you’re tasting? Is it sour or bitter or chocolatey or sweet? I think that you know, that takes that sensory experience too. Another level that I don’t hear very often. I think that’s very insightful thinking of it that way. That’s quite interesting.

Health Hats: I enjoy the experience of understanding how it’s grown, about the workers, and less exploitation of the third world. I don’t like feeling like I’m taking advantage of people in what I consume. I like stopping for five seconds and tasting this cup of coffee, tasting this mouthful of coffee. It’s like a sigh. Right. I’m just going to sit here for a second. I don’t have to think about what I must do next and whatever I’m puzzling over, but I can appreciate and relax with this taste. So, we could do this once a year. It’s such a journey. I can’t believe how much I feel like I know. In a way, you’ve ruined me, to tell you the truth. I can’t go to Starbucks anymore. It’s too strong. I can’t taste any notes.

I am more discerning when I’m away from home. I try to bring coffee with me because I love the routine of drinking coffee. Sometimes, I drink, and I’m disappointed. Like, oh my God, that was nothing. Or, oh my God, that was burnt. I can’t identify anything, and I get it; I’m so disappointed. Well, thank you for that.

Figure 6:Timemore Nano Manual Coffee Grinder

Jennifer Stone: I do want to ask you one question. We spoke several months ago, and you were looking for a coffee grinder. I sent you all these links to try. Tell me again about your experience with the grinder that you purchased.

Health Hats: All right. I’ll put something about it in the show notes, but it’s small. I think metal, like cast iron, is a one-cup grinder that allows you to adjust the fine grind. And it’s made. The design of it is fantastic. I pay much attention to design and healthcare and am very attuned.

And it’s straightforward to crank it. I feel like it’ll last forever. The handle folds down; you put it away. It takes up a tiny gym. We have a tiny kitchen. It’s a small footprint. Before that, I used this electric grinder, which was like one grind. I remember talking to you about it when I was starting to.

Jennifer Stone: The blade grinder.

Health Hats: Yeah, it was a blade grind, an electric blade grinder.

Health Hats: Well, you pointed me to a company and a grinder, and yes, I picked something different than you suggested because it was smaller. A Timemore Nano Plus Manual Coffee Grinder

Jennifer Stone: You’re hand grinding your coffee like people do when they’re camping. You’re traveling. But I love that you shared with me that you now enjoy the experience of grinding coffee, even though it takes longer than 30 seconds.

Health Hats: No, it doesn’t take long – 30 seconds. It’s way better, and I could adjust the grind. I had to try a little. My style of trying stuff is to overshoot the mark and back up. Do you know what I mean? It was easy to do that. It holds whatever I set, and I don’t do anything now. I like how it is. It makes my experience of it. That’s what I feel like. It’s just the whole experience.

Jennifer Stone: Not only does fresh ground coffee taste better, which we always talk about, but it also enhances your hand grindings and coffee-drinking experience.

Health Hats: Thanks. This is great.

Jennifer Stone: Thank you.

Image from DALL·E 2024-03-12 10.41.27 – A tapestry of coffee, notes, music

Coffee, notes, music – a logical progression. I’ve played music for the last 40 years. I’m just beginning to quiet my mind and let the music flow over me, not as background, but as hearing (tasting) notes, pitches, dynamics, location of sensation, emotion, individual instruments, parts, sections, coherence, and cacophony. I could go on. I love learning, be it music, podcasting, or coffee. I get high on the image of new pathways snaking across and around the Swiss cheese of my MS brain. Coffee, notes, music.

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson, Julia Higgins, and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band.

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. Links in the show notes. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Production Team

Credits

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies.   As mentioned in the podcast: drink water, love hard, fight racism

Inspired by and Grateful to 

Jeff Horner, Fred Guitierez, Ellen Bloom,

Links and references

Jennifer Stone (@jstonecollective) • Instagram photos and videos

LinkedIn Jennifer Stone | LinkedIn

www.jstonecollective.com, where you can find my podcast, Coffee Explorer

Bio:

Inspiring Coffee Drinkers to Become Coffee Tasters. From sourcing and roasting to brewing and training, I work with customers and coffee drinkers to improve their coffee skills and ultimately brew the most perfect cup imaginable.

I am a quality lecturer and licensed Q Grader by the Coffee Quality Institute. I am internationally recognized as an expert coffee taster and judge for the Cup of Excellence. I have expertise in finding, sourcing, and sharing remarkable coffees from quality global producers. Over my career, I’ve opened multiple cafes and created several specialty coffee brands, including Direct to Consumer and Business to Business. I have provided expertise to others in these areas and am always excited to share the best ways to brew coffee with the market.

Currently, I collaborate with other brands and businesses with a range of coffee education needs, operate a shop of the ultimate in coffee and accessories, and produce a podcast as a learning platform to share my expertise and passion for coffee. The podcast includes interviews with coffee experts and lovers, the journey of coffee and people, resources and insights, plus equipment recommendations and reviews. Let’s discuss coffee anytime!

Related episodes from Health Hats

https://health-hats.com/pod174/

https://health-hats.com/imagine-leverage-abilities-access-better-solutions/

https://health-hats.com/pod176/

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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)

Susannah Fox’s “Rebel Health” on the power of Seekers, Networkers, Solvers, & Champions in driving patient-led innovation & the communal fight against disease.

Full 36-min episode on YouTube

Two five-minute clips on YouTube.

Click here to view or download the printable newsletter

Contents

Table of Contents

• Episode
  • • Proem
    • Podcast intro
    • Realizing the Fragility of Health
    • Transition from Research to Activism
    • The Role of Perception in Healthcare
    • A System Versus Community View of Healthcare Innovation
    • Hacking Healthcare and Startups
    • Motivation to Solve
    •  Call to action
    • Seekers
    • Networkers
    • Solvers
    • Champions
    • Networker, Seeker, Solver, Champion
    • Networker, Champion, Solver
    • Persisting Boss
    • Leading by Helping the Helpers
    • Actors on the Stage of Innovation
    • Emergence of Champions
    • Serving Communities
    • Revolutionary Energy – Regina Holliday and Casey Quinlan
    • Draft Counseling – Working from the Inside
    • Champions Stoke Fires
    • Rebels in Health – You Are Not Alone
    • C-Suite and Government Meet Rebels
    • Step into Your Power
    • The Enemy is Disease
    • ​Reflection
    • Podcast Outro

Rebel Health by Susannah Fox

As a student of advocacy and activism, I draw warmth from the heat of others’ passion, marvel at the diversity of origin stories, and burst with curiosity about what might come next. How did they start on this journey, and why do they persist? I’ve been a nurse for 50 years. One of the best things about nursing for me was the license to be nosy – for a brief time – a visit or a stay. This nosiness melds nicely as a podcaster for an episode. I often ask guests, “When did you realize health was fragile?” Another student of advocacy and activism is our guest, Susannah Fox.  Susannah is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, has just been published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation, and she directed the health portfolio at the Pew Research Center’s Internet Project.

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

Health Hats: Susannah Fox, how are you? It’s so good to see you. I’ve been looking forward to this. You’ve been my idol for a long time. I first learned about you when you were at Pew Research Center, and I thought your perspective and research were so helpful.

When did you first realize health was fragile?

Susannah Fox: Wow. The first time I realized that health was fragile was when my dad was a flatliner on the table at the hospital after his heart attack. He was in his fifties and someone who, to anyone who looked at him, would’ve thought he was a health nut. He went four miles three times a week. He was fit. He loved to hike. He was a mountain climber. And yet he had genetically high cholesterol and a hidden, blocked artery. So, they luckily were able to revive him, and he had open heart surgery and lived long enough to then get kidney cancer in his sixties and melanoma in his seventies.

My dad was my model for lifelong health and perseverance. I love this question because it explains how you learned that health is fragile. But then also what? What happened when you learned that health was fragile? For me, it was seeing my dad persevere to regain his health each time he had a setback.

Health Hats: That’s admirable.

Health Hats: You had these experiences and are now in activism. How did that path happen? How did you get where you are now?

Susannah Fox: I don’t think of myself as an activist. I think of myself as a researcher and a strategist who collects data, studies the landscape, and then tells the truth about what I see. I want people to enter a landscape with an understanding that if they build something on the frontier of healthcare and technology, they must build it on sound foundations.

They need to understand the truth of the situation. However, I evolved as a researcher when I started this work and met Tom Ferguson, my mentor when I was working at the Pew Research Center for Lee Rainie. We hired Tom as an advisor. I went to Tom to understand the future of healthcare and technology. He said you must spend time with patients. They are the hackers, rebels, and cowboys on the frontier, bending tools until they break.

I started spending time in online patient communities in 2001. Tom would have identified as an advocate and activist, often pulling me toward that. And I was, frankly, resisting and saying, no, I’m over here as a researcher. I don’t judge whether something is good or bad. I just tell people the way the data lies. Yet, after 14 years at the Pew Research Center, I went to Lee Rainey and the then-president of the Pew Research Center, Alan Murray, and said, I’ve written 50 papers about the internet and healthcare, and I think I know what should happen next. I have opinions about the megatrends that are changing healthcare. And they said that’s great. You can’t work here anymore because the Pew Research Center rightly holds it as a core value that their researchers don’t have an opinion about how things should go. I’ve maintained my sense of being a researcher where I follow the data, yet I also recognize that being a researcher is where I train my gaze. I think of myself as if I have a miner’s light on my head, and where I train my gaze to look is an editorial choice. By looking closely at patients, survivors, and caregivers, I know that I’m choosing to honor the work that they’re doing. In that sense, I’ve gotten pulled towards advocacy. But I don’t identify as an advocate.

Image by Bradley-Pisney on Unsplash

Health Hats: It resonates with me when you say that. Because you’ve helped to inform my work, mostly in perception, like how people perceive. At Pew, you did a lot of surveys, and now you’re collecting hacks and experiences. Do you see yourself as a perception researcher?

Susannah Fox: The basis of my work was the telephone surveys we did at the Pew Research Center paired with my fieldwork, acting like an anthropologist going into these online patient communities.

After I left the Pew Research Center, I worked at the Robert Wood Johnson Foundation. And then at the Department of Health and Human Services (HHS). While at HHS, I put away my research and leaned into my work’s strategic side. But since then, I’ve partnered with my colleague and friend, Vicki Rideout, to produce research for clients like Hope Lab, the California Healthcare Foundation, and Common-Sense Media again, paired surveys with quantitative and qualitative work to give a clear picture.

I saw it in getting pulled into those higher-level conversations about health and healthcare at the Robert Wood Johnson Foundation, at HHS, and being part of the federal government. People who haven’t had the privilege to spend time in online patient communities did not see what I saw, which is how much innovation was growing up between the cracks of what we can all acknowledge is a broken healthcare system.

Health Hats: That’s so interesting. I’m on the Board of PCORI (Patient-Centered Outcomes Research Institute), an exciting place to be. My image is not so much the cracks. I think we have the same idea, looking at it differently. I feel that innovations are happening in communities. People have a problem to solve, and people get other people together. They figure out what’s going to work for them. To a system, it looks like things are coming through the cracks, but that’s a system view. The underground seed, with all these roots and activity, then some little thing breaks up through the institutions. That’s a community view.

Health Hats: I never thought of hacking as you do in your language. Hearing you write about hacking made me think that maybe hacking is all there is. I have this idea that activism should change the system. Maybe it’s better to cultivate hacking. It doesn’t affect the whole country like business does, going after the dollar, but it still impacts people.

Susannah Fox: Yeah, I want to react to that because I love this provocation of the metaphor of something growing up between the cracks as a system-centered view. I love that. The other way I think about it is the patient-led, caregiver-led, survivor-led revolution. Is that what they are? We are building the missing infrastructure. Some things are missing, and they’re building that infrastructure for themselves. I also want to say that, often, when describing a team of people that come together to solve a problem, you could use the same language to describe many startup companies. It’s a team of people who come together to solve a problem they think has the answer and want to affect the system. They want to help people. They want to scale. And that’s the same thing we see in the patient-led revolution. They want to help people, and they want to scale. It’s a fascinating question to think about. What are the motivations? The motivation to help people is at the base of many startup companies, nonprofits, and patient-led teams. Yet, how do you do that? You need resources. So, how do you get those resources? That is interesting. I appreciate that provocation. Thank you.

I need your help to expand my audience to younger people in advocacy. I’m doing more in short-form videos. Please help by pointing me to communities of young advocates and the channels and hashtags they use so I can listen and learn. I now have one URL for all channels and media. https://linktr.ee/healthhats is where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

Health Hats: I’m looking forward to your book. I am intrigued by your talking about seekers, networkers, solvers, and champions, but I want to start with which archetype you are.

Susannah Fox: It is a good question. Let me quickly describe each one. Then, I’ll share which one I identify as most often. The first group is seekers. Seekers feel that they’re not getting answers to their questions. The key here is that they decide whether their questions are being answered. They get to decide if the information is enough, and they decide. To go out on the hunt for more and better information, and it’s that spark, that jolt of energy that makes someone become a seeker. That is what I’m intrigued by. Often, when someone gets hit by a health challenge, they might be too stunned or exhausted to raise their hand and try and go out on the hunt. So that’s seekers. They go out on the hunt for information and don’t give up.

The second group is networkers. Networkers are people who naturally learn in the community. They can’t help but talk to others, whether online or offline. When they find something useful, they can’t wait to share it with their community. They’re people who pool resources and create a community where, frankly, wherever they go.

The third group is solvers and attack problems. If they are faced with an assistive device or medical device that isn’t working for them, they will try to take it apart and put it back together again. They will hack it, meaning they will. Try to find an elegant solution as a workaround, which is the original definition of a hack. Solver can also look at a system and see its flaws and, again, want to contribute to fixing that system.

Image by Thought Catalogue on Unsplash

The fourth group is Champions. Champions have access to resources generally controlled by mainstream healthcare or institutions – funding, media attention, regulatory guidance, access to labs and manufacturing facilities, or unique materials. A champion will look across the landscape. See a patient-led or survivor-led team with a great idea but needs the resources they control, and they will share them with them. They’ll infuse that team with a resource the patient-led team needs to scale their idea.

So, you ask, which do I identify as? At my core, I’m a networker. I am almost infamous for being unable to resist talking to people. And I love it. It’s a feature or flaw. It’s part of who I am. I love to learn from people, which is a trait of networkers. I would say that when I’ve needed to, I’ve taken on the role of a seeker and even a solver. I don’t think I’m a natural solver, but I figured out how to fix something when I’ve had to. And I also stepped into a role as a champion when I was at HHS, for example, starting the Invent Health Initiative, which brought this idea of patients, survivors, and caregivers who are. Creating new assistive and medical devices, the hardware of healthcare, that them into this conversation at the federal government level.

Health Hats: I think that. I am also, at heart, a networker, and a champion. And I think that a champion now that I’m older and I’m quote unquote retired and I’ve got this seat on the board of PCORI, and I have a podcast. I’m not so much a seeker. I’m a solver, but mostly, I use other people.

When I was a boss, I spent time looking at my team. First, I don’t know. I would cull the herd. It’s not a lovely way to say it. Some people had no business being on the team and dragged everybody down.  And when that happens, they must go. And then I would look at what was missing. I’m a person who has a lot of ideas and a lot of energy. I’m a good leader, and I can do the grunt work. But I’m not a maintainer and wouldn’t say I like it. I need help once it’s figured out. You must persist. There are different kinds of persistence. There’s problem-solving persistence, and there’s maintenance persistence. So, I would look for people with what I or the team didn’t have, which was beautiful because it works much better.

Image from Shutterstock

I didn’t think about seekers, networkers, solvers, and champions, which is a different way of looking at it. And so now I feel like my work is, I help the helpers, I don’t do that much, man, I spent 50 years as a nurse where I spent 20 years as a direct care nurse, and then I got into, being a student of organizational health rather than individual health. And so, then, I was a leader. And the challenge now is seeing people who are champions. Just because you’re a champion doesn’t mean you’re a good leader. I feel that understanding seekers, networkers, solvers, and champions helps people who are champions be better champions. Does that make any sense?

Susannah Fox: It makes sense because I was writing this book. I didn’t start to include the archetypes. I originally started the book to trace the stages of innovation that the patient-led revolution is going through. However, I realized that in trying to explain the various stages of innovation, I became increasingly intrigued by the actors on each stage and their roles. And I realized that it would be more helpful to, instead of talking about these stages, talk about the people, talk about the actors, and talk about the traits that I’m observing. And I went back into my field notes. I have 20 years of field notes of talking to people, interviewing people, and survey research to start identifying the archetypes. Then, I did fresh interviews to test these ideas. And I also want to share that the seekers, networkers, and solvers emerged immediately.

It was apparent to me. Often, when I talk about peer-to-peer healthcare and the patient-led revolution, people say, oh, I know exactly what you mean. And they describe networkers. They describe people who have started Facebook groups who use Twitter to organize, etc. And I say yes, and there’s another group of people who are seekers who may never actually be networkers. Some solvers also may not be interested in sharing their inventions, but who can’t help but keep inventing things?

Susannah Fox: The archetype of champions emerged as I wrote the book because I realized how powerful it is. When does something move from being a grassroots initiative where something is helping a few people? How do you scale that to move to something recognized by the mainstream that has been lifted and given the resources it needs? And it’s only through the intervention of champions unless an incredible group of people can. They are networkers and don’t need the mainstream to notice their actions to serve their community. But that’s an exceptional group of people.

Health Hats: There are two examples I am aware of this minute about more generalizations: the Camden Coalition and the World Health Network. Those are two organizations that intrigue me. Be, I think it’s tough to expand beyond. The common thing about seekers, network solvers, and champions is they have a fire, and you can taste it.

Image from https://reginaholliday.blogspot.com/2016/03/how-do-you-join-walking-gallery.html

Health Hats: And to me, I sometimes must protect myself because it’s so intense. When I first met Regina Holliday, it was like, oh my God, I needed a bullet-proof suit, and then I learned that I learned to thrive on it rather than protect myself from it.

Susannah Fox: There is an energy field around revolutionaries. Not everyone is cut out to be a Rebel. One important thing to know is that you don’t have to be a rebel to gain the skills and value from the patient LED revolution. You could temporarily recruit somebody to your team. So, thank you so much for bringing up this energy that can surround someone; also, people are hesitant and say, wait, I don’t want to be a rebel. I don’t want to cause a revolution, but my mom or my kids. So, you can tap into the revolution. You could tap into the energy and get what you need. And you don’t have to be part of the revolution. You don’t have to be a rebel to benefit from the patient-led revolution.

From Health Hats, the Podcast https://health-hats.com/pod193/

Health Hats: I used to have this conversation with Casey Quinlan because Casey is a public revolutionary. There’s just no question. She was the epitome of a revolutionary in healthcare. And I would tell her I like to work from the inside.

Health Hats: I like to understand how things operate. For example, I dealt with the draft when I was 16 and worried about being drafted. I trained to be a draft counselor because I wanted to learn the ins and outs, which made me want to work from the inside.

But I couldn’t have done it without the revolutionaries who started the programs and trained me. And you’re right. So, again, I think this business of archetypes and energy is. I am learning how to create the balance for the moment to get the next thing done.

Health Hats: People I work with who are hackers, change agents, or activists are often disappointed. Energy wanes, waxes, and wanes – I think it’s okay. I’m more of a, where are we today? What are we going to do now? That’s how I manage my health, and it is okay. I have MS. It sucks. Okay, here I am. What do I do? Okay, this new thing is happening. What do I do now? I want to do something but don’t have the capabilities right now. How could I have the capabilities? What do I need? Anyway, it changes, and so I think with champions- I don’t even see- I’m focusing on champions in this conversation. I think champions need a lot of help.

It’s hard work. It’s such a, I think it’s a lot of them. Is it fair to say many people who work with them are hurt? Why does somebody get into healthcare advocacy and healthcare hacking? It’s something shitty happened, to them, to theirs. And so that’s a sort of head of steam. It’s a kind of head of steam. I don’t mean a head of steam. It’s a type of head of steam that’s hard to work with sometimes. And I so I read your PDF when you sent it out, and now your pub. Oh, so your book, but anyway, one minute, and then we’re going to, you’re going to tell us about your book in more detail, but I’m ready to. I’m waiting for the publication on February 13th.

Health Hats: So, tell us about your book.

Susannah Fox: Oh, we did. We’ve gotten into the archetypes that I introduced in the book. When you referred to the PDF, I should share that you were part of a small group of people with whom I shared a preview, and I sent you the PDF so you could read it. We could have this conversation and other conversations. Thank you so much for being a preview reader. So, Rebel Health, the field guide to the patient-led revolution in medical care, is coming out from MIT Press on February 13th; you can pre-order it now. I wrote it so that anyone who gets hit by a diagnosis, a health challenge, or whatever in their life finds themselves in the maze of healthcare and feels alone. Please know that you are not alone. A group of people would love to help you find the way out of that maze if they only knew how to find you. If you can find the courage to raise your hand, go out on the hunt as a seeker, or join a group as a networker, some people are ready to help you. So, I wrote it for the general population. I think everyone is going to have a health challenge. It’s not a question of if but when. And that’s one group of people that I wrote for this book.

I was also thinking about my friends in the c-suite of healthcare who serve in government positions and have a lot of severe challenges in terms of their business, research, policies, and how they could benefit. From the incredible innovations and learning happening just underneath the surface of their gaze, the patient-led revolution. If you can align the patient-led revolution goals with your goals, whether your business, your policymaking, or your research, you will benefit from the energy being produced. We all have something to learn from patients, survivors, and caregivers.

Health Hats: Wow. Okay. What do you think are the most important things we’ve talked about?

Susannah Fox: One of the book’s most important messages is that you can step into your power. As a patient, caregiver, and leader, I tried to introduce a way to think about power, a way to think about either stepping into your power or sharing the power that you already have with people to solve healthcare problems.

Health Hats: It’s heavy. May the force be with you.

Susannah Fox: One other point that I wanted to make is something they came out in, one of the discussions in the preview group, someone asked in the group, so if there’s a rebel alliance in healthcare, who’s the empire? Who’s the enemy? And Ben West, a fantastic data hacker in the diabetes space, said that the enemy is a disease. We won’t point fingers at any entity or any part of the industry. The common enemy of humanity is disease, and we need to stay united in working against the spread of disease. I love that. As another theme, Rebel Health is about lifting science and the social nature of healthcare. It’s about accelerating what is happening, an ancient human condition where we want to connect with others. And solve problems together, and technology is helping us to do that faster.

Health Hats: Thank you. This is great.

Image by Ann Boland

I can’t recommend Rebel Health by Susannah Fox enough. The enemy is disease – thanks for that golden rule. Susannah’s archetypes: Seeker, Solver, Networker, and Champion meld well with one of my frames for health and advocacy, the three Ts and 2 Cs (Trust, Time, Talk, Control, and Connection). As a person who sees life as grey, not black and white, the one absolute I’ve found is that almost all leaders in healthcare perceive that they lead chaos. The archetypes plus the 3Ts and 2Cs may help leaders slightly controlled the chaos. Some order may be all we can ask for.

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band.

I buy my hats at Salmagundi Boston and coffee from the Jennifer Stone Collective—links in the show notes. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Please comment and ask questions:

Production Team

Credits

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies.   As mentioned in the podcast: drink water, love hard, fight racism

Inspired by and Grateful to 

Kathleen Noonan, Vicki Rideout, Nakela Cook, Kristin Carman, Regina Holliday, Yaneer Bar-Yam, James Harrison

Links and references

About our guest, Susannah Fox

Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, Former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation, and directed the health portfolio at the Pew Research Center’s Internet Project.

Tom Ferguson, Lee Rainie, Alan Murray,

Vicki Rideout, Hope Lab, the California Healthcare Foundation, and Common-Sense Media

Related episodes from Health Hats

https://health-hats.com/safe-living-in-an-epidemic/

https://health-hats.com/covid19-end-of-life-choices/

https://health-hats.com/cinderblocks4-medical-advocacy-at-its-best/

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)

Celebrating my audience. Describing my multimedia journey, stats, ongoing advocacy, future episodes and a musical bonus featuring the host on the Bari Sax.

Show Notes at the end.

None today.

The same content as the podcast, but not a verbatim transcript. Could be a book chapter with images. download the printable transcript here

Contents

Table of Contents

• Watch on YouTube
• Read Newsletter
• Episode
  • Proem
  • Podcast intro
  • Managing my bandwidth
  • Still learning in my sandbox.
  • Advocacy
  • Podcast Outro
  • El Quitrin
• Episode Notes

Welcome to this bonus episode of Health Hats, the Podcast for subscribers I appreciate. Life is good while I play in the sandbox of audio-visual communication about best health. One of my Reckoning colleagues (we review each other’s podcasts), Craig Constantine, describes his audience in each episode so he remains focused. I look at the bobbleheads on my windowsill: Scarecrow, Rosie, the Riveter, and Scully from the X-files. My audience is people who help people on their journey toward best health through caregiving, technology, measurement, spiritual strength, and planning. You get the idea.

For an added treat. At the end of this post, I’ll include Lechuga Fresca Latin band playing El Quitrin by Bebo Valdez with me on the Bari Sax. Link here if you want to listen now.

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.

I’m finding video creation and production so exciting that I spent 100 hours on the last episode, #214, with Fred Trotter. I can’t sustain that pace. I realized I had spent so much time on a full-length video with images, title slides, and the like that I neglected the meat and potatoes – the blog/newsletter and audio podcast. I also need more time to play my horn and improve my music production skills. So, after spending all that time, I published the full audio podcast (63 minutes), two five-minute and four one-minute videos, and a 30-second teaser/trailer. I think I’ll put the five-minute ones on YouTube as discrete episodes as they stand alone.  You can find them here: Video 1: Naughty Secret about Chart Reviews https://youtu.be/yLRilkr1LJI and Video 2: ChatGPT and health coverage https://youtu.be/pk4wYl0_U9s.

I remain committed to multimedia because you are all so different, and it’s a hoot. I’m continuing my understanding and skill at short-form videos for social media, especially Instagram. My team of Julia, Kayla, Leon, and Oscar cheer me on. I love that I can still learn.

If stats interest you – I don’t know what they mean – for some reason, the downloads for the audio podcast have increased from an average of 5-10 a day for years to 27 a day for the past 30 days (or an increased from 80 to 800 an episode). 90+% of those downloads are consistently listened to for at least 3/4 of the episode length over the years (that includes people who automatically download. See what I mean about not being sure what stats mean).  For those who subscribe to the newsletter version, with almost 50% opened, and readers spend more than five minutes reading when they do open. Kayla tells me I should be proud of that. Social media stats indicate that people scroll past and increasingly stop but don’t stick around for over a second. It is early days, and I’m refining my process. YouTube shorts require clips to be less than 60 seconds, but I’m not sure that’s my target so I may go for two-minute clips on Instagram and TikTok. Again, this is a totally fun sandbox.

Rebel Health by Susannah Fox

Advocacy-wise, my attention is shifting to Long Covid, community responses to health challenges, and understanding more about the characteristics of people who gravitate to and champion advocacy.  My next episode is with Susannah Fox, author of Rebel Health and a hero of mine (book published on February 13, episode on February 18). I have an episode coming up with Jen Stone about all things coffee. I’m scheduled to meet with Kathleen Noonan, CEO of the Camden Coalition. We’ll likely schedule a time to record a conversation. There is so much good happening in this insane time we live in.

Be safe, drink water, love who you can, and fight racism. Keep in touch.

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band. I now have one URL for all channels and media. https://linktr.ee/healthhats is where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. Buy some coffee here—links in the show notes. I’m grateful to you who have the critical roles as listeners, readers, and watchers. If you like it, share it. See you around the block.

El Quitrin played by Lechuga Fresca with Danny Health Hats on Bari Sax.

Please comment and ask questions

Production Team

Other Credits

Susannah Fox, author of Rebel Health

El Quitrin by Bebo Valdes played by Lechuga Fresca with Danny Health Hats on Bari Sax

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)

Inspired by and grateful to all of you subscribers and Susannah Fox.

Related podcasts

https://health-hats.com/pod176/

https://health-hats.com/pod173/

https://health-hats.com/pod128/

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.

Fred Trotter on the balancing privacy & connection, the role of AI in societal judgment, and practical privacy protection strategies with a nod to Mighty Casey

Watch two five-minute podcast clips on YouTube.

Click here to view or download the printable newsletter with associated images

Contents

Table of Contents

• Episode
  • • Proem
    • Podcast intro
    • Privacy in Digital Communication
    • Harm reduction, safety, data aggregation
    • Communication minimalists and maximalists
    • Privacy in small villages during the Bronze Age
    • Privacy in the viral modern age
    • Judicial engine
    • Privacy and shame
    • Denied access
    • Peer-to-peer connection and privacy risk
    • People-to-needs connection
    • A connection you don’t know you have
    • Harm reduction
    • Oversimplification of harm reduction
    • Redlining
    • AI Artificial Intelligence
    • Call to action
    • ChatGPT and health coverage
    • Aggregating information
    • AI judicial processes by Insurers outside the courts
    • What can I do to reduce potential harm?
    • The Light Collective
    • Password managers
    • Pseudonymity
    • Low-tech approaches
    • The Electronic Frontier Foundation
    • Inter-rater reliability in chart reviews
    • Inter-rater reliability and AI
    • AI can make a complex system faster, not better
    • Situational awareness
    • Expectations of organizations
    • ChatGPT and Large Language Models
    • The Mighty Casey Quinlan Approach
    • DALL.E – AI Images
    • Privacy of creators
    • Dangerously hopeful
    • ​Reflection
    • Podcast Outro
    • Please comment and ask questions:
    • Production Team
    • Credits
    • Inspired by and Grateful to
  • Links and references
    • Related episodes from Health Hats
    • Creative Commons Licensing
    • CC BY-NC-SA
    • Disclaimer

How does YouTube know so much about me? I’m searching on my browser for solutions to my too-slow-responding Bluetooth mouse. In moments, YouTube feeds me shorts about solving Mac problems. I’m following a teen mental health Twitter chat, and my TikTok feed shows threads about mental health apps. How do they know? I’m getting personal comments about my mental health. My mental health is mostly good. Who else will know? Do I care? I live my life out loud. I don’t share what I wouldn’t want on a billboard, which, for me, is almost everything. When is that unsafe? When would I be embarrassed? I’m no longer looking for work, so I don’t care. Who can access my data? What should I share? What does privacy even mean? How does privacy impact the need for connection? Isn’t privacy a continuum – different needs at different times from different people?  So many questions.

Today’s guest, Fred Trotter, co-authored the seminal work Hacking Healthcare. Fred is a Healthcare Data Journalist and expert in Clinical Data Analysis, Healthcare Informatics, Differential Privacy, and Clinical Cybersecurity.

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

Health Hats: I picture movement along a continuum when I think about Digital Privacy. Complete privacy is connecting with no one. That’s intolerable. No privacy is connecting with everyone about everything. That’s unsafe and exhausting. Privacy and risk tolerance go hand in hand for me alone and for me with my peeps and tribes. Risk tolerance isn’t fixed it changes with context. My thoughts get muddier when I associate privacy and connection. They are flip sides of the same coin. I need community connection. But the more I connect (content and reach), the more complex privacy becomes. My approach to managing privacy involves harm reduction, a term used in substance use treatment. So, based on my ever-changing risk tolerance and my need for connection, how do I reduce the harm privacy issues can cause?

Fred Trotter: It’s funny that you mentioned harm reduction. A college friend of mine, Elizabeth Chiarello, is an opioid researcher. She studies pharmacists and their situations in different regulatory contexts. She is a harm reductionist. During this conversation about harm reduction, I think harm reduction is like patient safety, where there are two versions of the word. One is a term of art that comes from a particular clinical context. Of course, as you point out, harm reduction is usually talked about in the context of opioids, which means let’s not criminalize this and instead focus on reducing the harm that this complicated and miraculous class of drugs provides. Patient safety is a similar term, wherein the specific clinical context is a set of procedures that hospitals should follow to ensure that unnecessary harm doesn’t happen. Then, the more general lessons could come from these approaches to harm reduction. Perhaps this concept should have a life outside this context and become broader. Let’s take away some of the judgment in harm reduction, like shame associated with some consequences. These negative, arbitrary consequences are associated with a particular clinical topic. Patient safety, like harm reduction, is the generalizable version in whatever context you are discussing. Are you using best practices to reduce patient harm in a particular context? Honestly, very simple. As you switch from an inpatient hospital to an outpatient context to the context of doing research and data aggregation, it’s unclear what patient safety means.

So, what do privacy and harm reduction mean? That’s something to chew on. These are terms that mean what you want them to mean in the context of a conversation. They’re pretty good terms. The internet, in general, has taken terms like health equity and made them politicized and controversial. The internet can tear a word apart and make it useless. People hear a word and hear different meanings or stories when they say the same word. That makes good-faith communication difficult. Similar words like patient, safety, privacy, harm, and reduction all have some powerful expectations.

Fred Trotter: When you talk about the risk spectrum, I hear two privacy and cybersecurity camps I can’t entirely agree with. One camp is we’re going to communicate no matter what. Use HTTPS, an encrypted connection, as opposed to HTTP. But we’re going to communicate, we’re going to send data around, and we’re going to do what needs to be done. We’re not thinking about the implications of the data moving. It’s somebody else’s problem-communication maximalists. Then there’s the camp I used to have problems with: let’s shut it all down. I want my medical bills to go over snail mail, please. I don’t want electronic anything happening to me. Let’s go to zero on communications if I can prevent it, and let’s wait until we can figure out how to secure it- communication minimalists. The implication of what you say when you say, I have a risk spectrum, is, do you want the communication to happen, but not in all contexts? And you’re willing to trade off some communication to reduce risk in some contexts. Contexts, in and of itself, acknowledging that some balancing needs to occur from my perspective, are the basis for a sophisticated conversation. A surprising number of people need to be convinced that any consideration of privacy is reasonable. Like any balancing, it is good because they’re communication maximalists; any communication is good, and communication minimalists, no communication without absolute privacy.

Fred Trotter: Suppose sociologists and anthropologists look backward in time and consider how things were when most of the world lived in small villages. In that case, it’s tough for the whole village not to know everything about you. If you look back into the bronze age, running a city was a logistical nightmare because you didn’t have trucks or anything else. You have grain carts coming in and out to feed people in all these villages, so the vast majority lived in places with under 200 people. But all cooperated to make some land work effectively. So, there was no privacy, but there was also no aggregated data there. I guess there was no harm in scaling, for lack of a better word.

Fred Trotter: If you go viral in the wrong way in the modern digital era, either you or I could say something dumb and go viral in the wrong way on this and every call we’re on. But if you do something where you think nobody’s watching, and somebody is watching, somebody does have a camera, you think you have privacy, you don’t, and that becomes viral. That could ruin your life and sometimes should, right? So, I think issues like police violence and the cases where police officers are misbehaving, we need cameras for a lot longer than we’ve had them. I’m sure thankful that we have the cameras now. So, I’m not necessarily even saying that going viral negatively and having mass consequences with your reputation destroyed for a million or a billion people at once is necessarily a negative thing. In some cases, that’s warranted, but it is a new judicial engine, how we’re going to judge people and how we’re going to evaluate them.

Health Hats: What do you mean by a judicial engine?

Fred Trotter: I think it is an alternative to the traditional rule of law, a system for judging. So, if you and I disagree, and we haven’t committed any crimes – like if I hit you in public, that’s assault. There’s a judicial process that the government takes over once that crime has occurred. But we can see each other in private court and around this system of jurisprudence, the rule of law. Certain things are assumed, such as innocent until proven guilty. People fail to realize how much evolution has occurred because we have the concept of trial by judge, contrasting with trial by jury. And you can go to a court and decide very early in the process which of those two things you prefer. Sometimes, you can’t. The concept was that God would favor whoever was right in the argument. If you lop my head off, well, you were right. And vice versa. So, the judicial process has taken centuries to evolve. It has variations across the globe. The variations are significant. Suppose you think about the judicial engine system in Singapore. For better or worse, it is famously different from the one in the United States. So, we have this concept of adjudicating problems and potentially passing judgment on people and social media.

Health Hats: How would you define privacy?

Fred Trotter: We have this ancient bronze village. If you screw up, it’s limited to 250 people. And if you screw up, you might have to switch villages. And then we get to the modern era, and there was this weird period where you could get a house in the suburbs and have a greater degree of privacy than you had in the village. Nobody knew your business. You were behind your closed doors, and you had your yard. The yards were buffers against information leaking out. Now, we have a reduction from that temporary place of strong privacy to what we have today. There have been many revolutions in our understanding of shame. As we’ve been studying it lately, we’ve understood what a powerful force it is, and that is the mechanism by which this extra-judicial system works. So, the freedom to process the issues in your life might bring shame, either in the sense that I feel it myself or that other people are attempting to make me feel it, on issues that might be so personal that your shame might be a problem. One thing differentiating patients in how they come out on privacy is whether their medical condition is socially acceptable and socially welcomed, which, of course, changes in society about what’s welcome and what’s not. So, I don’t think you can talk about privacy effectively without discussing shame and what we choose to shame in our culture. I do think how I think I’m unique in defining it that way.

Health Hats: I never thought about shame.

Fred Trotter: I have this long hallway in my house. If you look that way, there’s a long hallway; it’s not a big apartment I have. I love my apartment because of the long, thin hallway. I frequently find myself because I’ve forgotten my implements, you know, walking naked down this long hallway, and there’s just one building on the other side. There’s this giant window that can see in my long window. Now, I’m not ashamed of how I am naked. I’m okay with my body and everything else now, but that doesn’t necessarily mean that I’m keen to have somebody with a camera taking a photo. So, am I ashamed of my body?  Do I have shame for my nakedness? What privacy means is, I’m good if I’m thinking about it, from the perspective of a photo on the internet that never gets taken down in the Barbra Streisand effect. That one probably well-meaning neighbor, I don’t know them, can take time to figure out how to get a picture through my window. And I think everyone’s windows are the same way, right?

I’m not unique in this situation. It’s just the situation I’m thinking about. I think there’s probably an equivalent situation where you live, and every person has those and neighbors unless they’ve taken a lot of effort to ensure they don’t. It’s not actually that people who are concerned with privacy don’t subject themselves to those variables. I think there is a lot of space for discussion. I’ve been thinking about shame for a long time, and I think this patient community has a lot of shame issues when they use their preferred [social media] platforms. Some people don’t feel shame, such as people who have colostomy bags—having a digestive system that essentially is no longer a hundred percent inside, for lack of a better term. There are people now who go online and say. I will take pictures of myself in a bathing suit with my colostomy bag at the beach, which is marvelous. I applaud that because I think what you’re trying to do there is you’re trying to refactor the shame. You’re trying to say, well, this is not something shameful. It’s just a fact of life for me, and I won’t put that in your face. But, you know, if I want to go to the beach.

Health Hats: Okay, there’s this piece of it that’s shame, but then there’s a piece about what people do with the information. If I am denied access to something, I don’t get a job, or I can’t get insurance or something.

Fred Trotter: Well, I hope my definition extends to that. Because what I’m talking about is not just that for which you feel shameful.

Health Hats: Oh, you did say that.

Fred Trotter: The sense in which other people say that in you is unacceptable. We are going to go extra judicially.

Health Hats: Oh, we’re back to the judicial. So now this is falling together for me. So, what do you think about this? The connection, the desire for connection, and your tolerance of privacy risk.

Fred Trotter: So, I think you’re absolutely in that vagary. I think there are two different underlying meanings for connection. They have two very different implications if I’m talking about my need to communicate with you and my stuff with you, which is peer-to-peer connection stuff. Society is still reeling whenever we have a new medium with different rules. TikTok works differently than Facebook, which is different from Instagram. Every time that happens, we have a different understanding of what it means to be peer-to-peer.

One-on-one and peer-to-group peers. Communication in terms of what clinical privacy might mean. However, I also think that when you say a need for connection, I think of the boring stuff, which is, in many cases, a much, much bigger deal: you have a very dull need to connect to your health insurance company. I think there are people to people, and then there are people to needs. You switch clinics. That’s a connection. You get a new insurance. That’s a connection. All these connections are tedious and happen in the background, and then there are the connections you willfully make, which are making a new friend and having a new romantic relationship.

It’s a new community when you’re a patient who’s just been diagnosed with X, Y, and Z and want to discover what other people are doing. Those are different, but they both fall under the definition of connection.

Fred Trotter: I think there’s a middle ground where you have a connection made that you assume is not one where your privacy is invested, but it is. Credit card companies and Facebook are perfect examples. It’s completely different than deciding to connect and share what’s going on in my personal life with a new person individually or in a group. These supposed boring and safe connections that you have with your health insurers and people in the HIPAA world, privacy extracted as a business case where you have a connection. I think your paradigm is correct. There’s a connection, privacy, and how they interact. When I’ve shared something personal with you, I’d rather you not say that to the whole world. That’s privacy as a peer-to-peer phenomenon. When I’m talking to my doctor, or I’m talking about health insurance covered by HIPAA and this new middle ground where Apple knows whether I have HIV, even though I’ve never explicitly told Apple, I’ve not necessarily used their health tools. It understands because it’s following me so entirely that they know that. Google does so for different reasons: Amazon, Facebook, and many other places you wouldn’t think, Target, where you shop famously, you know, are in this category of people who can infer with a very high degree of reliability what your health conditions are and other things that you might want to keep private. So, I think there are at least three big buckets of what connectivity and privacy mean when you think of connectivity versus privacy because of the regulatory and practical circumstances under which we live.

Health Hats: And they are.

Fred Trotter: If we talk about harm reduction, it’s similar. There are multiple levels of harm reduction. There’s harm to me, from individual to individual. There’s harm that you don’t necessarily see. You’re unaware of what’s happening; this means somebody knows something about you, sells it, denies you something, you know, that’s hidden.

Health Hats: So, with reducing harm, there’s stuff you can control, and there’s stuff you can’t. I would be pressed to say what I can control and can’t. What do you think about the harm reduction in terms of this? We’re talking about a better understanding of how complex any of this is.

Fred Trotter: So, let me make helpful oversimplifications. I invite you to do the same. It helps complicate. You have to acknowledge that there is an oversimplification. So, I’m oversimplifying a bunch of things to make valuable points. Let’s oversimplify the peer-to-peer thing by assuming that if you’re rude to people at a birthday party, all your friends and family are at the party, and you’re rude; they’ll shun you a little bit, right? And so the problem on the, the, the problem with peer-to-peer privacy, you can oversimplify to be that scales nearly infinitely so if I’m rude at a birthday party now. I say something that, you know, the parents don’t appreciate, the birthday child doesn’t appreciate, and somebody catches on a camera that can scale, but the whole world knew that Fred was rude in a birthday party.

So, scaling is the problem with the peer-to-peer? Let’s assume that is all there is to this.

Health Hats: Right. No, I hear you. But that’s a good point.

Fred Trotter: it’s a good oversimplification. It’s just that what used to didn’t scale now scales. The problem with them is that let’s assume that the peer-to-peer stuff is there. Let’s assume, also for an oversimplification that your doctor and your insurance company are always on your side. So, let’s assume everything that HIPAA covers works in your favor. You know, that’s a dangerous oversimplification because we know that that’s not true. But let’s assume that it is, and let’s assume that when we talk about the con, the real problems with privacy are this much less regulated, much less opaque, middle ground of big tech understanding stuff about you that you didn’t know that they understood, where you didn’t explicitly tell them.

Fred Trotter: And I think the redlining problem is the problem. I’m referring to the case of the racist past of the United States, where there were explicit rules in the financing in the industry to ensure that certain parts of town were available only to people of certain races. Now, of course, the problem with that is that there’s a very explicit, racist past, and there’s a study by 538. And, of course, you didn’t introduce me, but I’m a healthcare data journalist. So, I’m a con; I want to use data and understand things. And 538 are data journalists who cover hot healthcare topics. It’s like they’ve discovered that, in general, the former explicit practice of redlining carries over into a modern world where redlining still happens.

The neighborhoods are still segregated, and it just continues. The experience that I think is critical for redlining is that it is in this zone of the judicial processes that are not formally part of the judicial system. People are making societal judgments about people, and they don’t know. Of course, any community talks. So, if your community can never get more mortgages in a particular area, it’s not like you don’t know that, right? But there’s also no formal judgment. You don’t understand exactly what’s going on. Who is doing that? Is it the government, and is it the banks? Is it the real estate agents? And, of course, the answer we know now is all the above. We’re participating in that. So, what’s happening? I’m very, very concerned. Well, two things. One is that explicit policy, which was made illegal a long time ago, was practiced even before that and still has impacts today. And, practically speaking, in some cases, you could say that the policy is not over. It embeds an unethical practice into a system that impacts everyone. I’m very concerned that those unethical practices are embedded into modern AI.

Fred Trotter: And, of course, I’m not the first person to consider the possibility that modern artificial intelligence might be racist or sexist. You know, it’s unethical and discriminatory in some other way. That’s what everyone’s talking about. I think as a healthcare journalist and, in this conversation, I’m much more interested in discussing precisely how those problems can be healthcare-related as opposed to real estate. I don’t know anything about it. I don’t know anything about redlining. I don’t know anything about real estate. That’s not my area except knowing this is a huge problem affecting our society. Also, it is one of the areas where, even now, your zip code is more important than your blood pressure in terms of your healthcare, right? And so there are cases where I try to be at least somewhat informed that these issues ultimately impact people’s health. I have a story about what I’ve recently learned about AI, which I will discuss extensively. Because I think it’s essential to understand. I think about this judicial thing; you’ve picked it up four times. Thank you for that.

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Fred Trotter: I’m thinking about this extra-judicial, outside of the formal court system judgments we always make in society. The most important thing in healthcare is coverage decisions. Is your treatment going to be covered? Is your medication of choice going to be covered? Will the medication that works for you be covered instead of the one that works but doesn’t? I discussed this on my video casting on LinkedIn, where a physician used ChatGPT to write the letter he would send to an insurance company to say this procedure should be covered. I can’t remember the clinical topic; it doesn’t matter. I didn’t understand it when I was talking about it. He said something like, take my side in a clinical argument.

Then, he constructed the clinical argument, had a respectful tone, and provided references. So, sure enough, ChatGPT spits out this thing. What I thought was interesting was that there was no question about whether he was right. He just told ChatGPT that he was right and then had ChatGPT argue with him. So, I did, in live streaming. I tested to see if I could reverse the polarity entirely. And I said I’m an insurance company chat, GPT. And here’s the clinical topic precisely as the physician described it. Show why that’s not necessary and provide references, right? Use a respectful tone. Sure enough, ChatGPT took the other side of the argument and asked why that was unacceptable. So, one of the reasons why I have been so focused on the judgments that we make and how things get decided is that I think it’s going to be substantively outsourced to AI that has access to parts of your digital footprint that you wouldn’t necessarily want them to put together in a particular way.

Do I have a problem with the fact that I’ve got an STD? Do I have a problem with the grocery store knowing that I bought ice cream and them knowing that I got a particular prescription in the pharmacy? They knew that I was there, let’s say at two; what time is it right now? It’s Tuesday in the early morning. It’s not an average time for a professional to go to the grocery store or the pharmacy. But if I have an urgent matter, I will go there. So, am I comfortable with the grocery store, knowing when I was there, what the medication was, and that I bought a particular item in their grocery store? I don’t have a problem with that. I have a problem with them putting that all together and knowing that I have an STD. Yeah, I do. That’s not their business. So, they are, of course, putting that information together. It’s not that they’re putting that information together to figure out whether Fred has a particular STD, if Fred has a particular condition, or if Fred has this or something else that might be considered shameful. They’re putting everything together for everyone. Is everything suitable? They want to have this picture because that’s a valuable picture they can sell. They can sell me more if they understand my problems, what interests me, and what I might buy.

However, in certain circumstances, that information is super damaging. So, I’m very concerned with AI. We have all these processes like judicial processes where you request to have your medication covered, and then the insurance companies send it back and say, well, no, we’re not going to do that. Okay, you can appeal that to a higher level, and you can say my doctors are now involved, my doctor’s mailing you. And it goes back and forth like this until almost all judicial processes outside the courts have finished. Then, they will switch to being in the courts. And I foresee a human judge looking at a set of correspondence where no human has written anything. Where it’s been AI on both sides, all the way up to the top. And then the first time a human is saying is this judgment reached by this outside deciding system outside the courts. I don’t want to say extra-judicial because that has a meaning, but I think it’s hard not to say that.

Health Hats: I get it.

Fred Trotter: Outside courts decide, and then it goes into the courts, and then for the first time, a judge is there reading words written and read by AI, and no human has ever written or read. So, I’ve been denied my medication, and I know we’re working on it. But what I mean by we are the AI advocates for my doctor, and the AI advocates for the insurance companies have been interacting and trying to sort it out, and they can’t reach an agreement. And now, we will go to court about whether this medication is covered under my insurance plan. I think that’s not just; I don’t think that’s a fantasy.  That’s going to be a new normal.

Health Hats: I am awash in how complicated this is – how much risk there is and how evil it is sometimes. And so, what can I do? I’m not so much asking you precisely what I can do. I’m not asking that yet. I’m going with how we’ve been talking, breaking down the buckets within what I can do. Here’s what I can do at the level of password protection, like individual things that I can do, and I’m not minimizing anything. Like saying that password protection is enormous. But then there are policies and regulations influencing that. But how would you break down the domains of what I can do to reduce potential harm to myself in this arena?

Fred Trotter: So that’s a difficult question. So, we formed The Light Collective, an organization intending to try and take a stand and provide some education about what you should be doing to protect yourself, to advocate for yourself and regulation, and these kinds of things. And I continue to endorse that organization. I don’t work with them as much as I did when Andrea Downing and I started it. But I continue to endorse their purpose and their actions. I continue to be impressed with that team. So, if you want a corpus of stuff to study, go to Light Collective. They’ve got a resource library. That’s probably what you want to read about.

Fred Trotter: Password managers are essential. I understand the problem from my cybersecurity background, yet I find myself perplexed about exactly how to approach this stuff. I’m dubious that education and learning will help because I’ve learned a lot, and I’m still in a position where I don’t know exactly what to do.

Health Hats: That’s quite a statement.

Fred Trotter: It’s a problem. Let me tell you some of my generalized approaches. I use a password manager. I do not use a password manager that is incorporated into my browser. Using one in your browser is probably good practice because it’s simpler.

Fred Trotter: I choose to go one step further. I started to embrace pseudonymity formally. I have two accounts on every device I have. I’ve got Fred Trotter, and then I’ve got another user I log in as. And I’ve got a separate private identity that I’m using to look up stuff. Suppose I’m concerned enough about my privacy to turn on anonymous mode, a private window. In that case, I should do that in a user account on my computer that is separate from everything else. I do a substantial amount of browsing over there in that world. I have a different Amazon account. I’m doing that because I want to break at least a little. I use the VPN over there. I’m trying to create a different whole identity so that I can’t be pegged down so quickly as precisely and exactly what Fred Trotter is interested in.

We also know his social security number; you can tie everything together. That’s an idea I’d not run by the collective to see if that should be default advice. Separate your work life from your non-work life. I’m Fred Trotter, and I consult about health IT, privacy, etc. That’s one user. And I’m a different user when watching Netflix and all that stuff. And I think that’s a good idea because there are many things you don’t think about automatically when you do that. So, a way to aggregate a bunch of good ideas, the VPN, the password manager, the different accounts, and everything else into a simple system that’s easy to do.

Fred Trotter: Do you have any tips like that? What is the easiest way to ensure you’re naturally doing those?

Health Hats: Yes and no. The one thing is that I don’t like to say or put anything on electronics that I wouldn’t want on a billboard, which doesn’t deal with so much. It doesn’t deal with limits on access. It doesn’t deal with that at all.

Fred Trotter: But I think it’s exactly what I was suggesting with this idea, which is there’s a bunch of other things that you do correctly because of that, and that’s like when I try and don’t always succeed. When I’m discussing Danny behind Danny’s back, I always try to say, is this conversation something I would be comfortable hearing? And most of the time, I’m talking about you. And, of course, I don’t talk about you. I don’t talk about most people when I do, but I occasionally talk about others. I try to think before the conversation begins. I would have a conversation that, if it were recorded and this person heard it, they would either feel nothing or feel good about what I said – not that I’m hurting someone.

Health Hats: Is the mic on when you thought it was off?

Fred Trotter: Exactly. Then you’re okay. That’s a good policy for a dozen other reasons besides the excellent human policy. I’m suggesting honest advice to my two users on a single computer: have a personal computer and a work computer. But that’s honest advice. But I can’t afford to do that. Nobody can afford to do that. So, all two different users are as close as you can get to that. The other reason it’s good is that you turn off the work computer. It’s a good thing to say I’m not here right now. I’m over there. I’m on personal time. I think that’s positive. And again, I think the Light Collective has a lot of good stuff.

The EFF Electronic Frontier Foundation probably does the best for patient privacy without being labeled as a patient privacy organization. They release many tools, think carefully, and are constantly advocating. If you want something other than the Light Collective to learn, EFF is powerful.

There’s a not great secret of the healthcare system: inter-rater reliability on chart reviews. Let’s say your healthcare organization will be doing a study on your healthcare conditions. Before that happens, somebody must review your chart and determine if you have the disease. Are you doing well or poorly? To what degree do you have side effects that will prevent you from participating in this study? Do you have a secondary condition that will prevent you from this study? So, researchers have people with clinical experiences, doctors, PhDs, and nurses, and they cross-train these people. I heard at that same conference that a large institution has 50 full-time employees doing nothing but this. These chart reviews are essential for research organizations. The naughty secret about chart reviews is that when two people do a chart review, they will get the same answer about 85% of the time, sometimes a little less, sometimes a little more. I’m talking about consistently if you have those 50 full-time employees, and you test them on the duplicate records repeatedly, and you see how often they agree about what they say. Based on clinical topics, you would think it would be something like 98% or 97%, which creates these rules of thumb in other industries where complex situations must be evaluated. They get up into the nineties, high nineties in the end. But in chart reviews, it’s shallow. 80-85% are average numbers. That’s not great.

Fred Trotter: When you do a chart review or observational study, you will look at data. Suppose you will use that data to recruit for a clinical trial. The starting status of the patients is foundational. Then, we’re going to assign people into groups randomly. We will do all the work of studying the six or seven different permutations of study types. They’re all grounded in this chart review process. At this conference, they revealed, which was news to me, that they trained several off-the-shelf ChatGPT and some other large language models you can download on your laptop and run. The percentage of inter-rater reliability between the large language model and the people was 85%. The problem I see with that is it’s one of these cases where we have not adequately gotten human intelligence to solve a particular problem. When researching healthcare, we all live with this complex problem: people can look at the same healthcare record and see different things. Now, we’ve figured out how to make a significant language model stand in as one of these reviewers when you have 50 full-time employees doing something.

You could also scale it out. You could fire half of your human raters, keep half of them, and not just have 25 replace them. You could have 250 replacing them. You can say, AI, why don’t you evaluate this chart the same way Mary does? But you know, when she’s having a bad day, like when she’s got a hangover, or when she’s feeling particularly pessimistic about people with diabetes, whatever it is like, you can intentionally introduce bias to these 250 large language models raters. And you have, say, 50%, 30%, or 10% human. But they’re validating that the large language models are not going too far askew. You’re just keeping a human in the mix to keep it from going crazy. You would probably improve your overall chart reviews. However, the improvements are limited to what human intelligence was able to accomplish, and human intelligence has not been able to solve this problem. As I’m hearing this, the insurance and the adjudication process concern me. I think the chart review adjudication process is of concern. In all these cases, we will be in a place very soon where we’re taking humans out of the mix without ever getting to something fair, equitable, reasonable, reproducible, and decent for patients, providers, and health insurance companies. I’m not interested in having whatever the patients say goes. But certainly, we are not in a place where the patients are fully respected.

Health Hats: When I first led an EHR implementation from paper to electronic, I had enough sense to know that our core billing data sets were crap – too many duplicate, outdated patients and providers lists. I tried to insist, not knowing how vital my instinct was that we clean it up before we automated. I was only somewhat successful. The data sets were messy, and they didn’t want to use the resources to clean it up. So, we ended up automating garbage, faster garbage.

Health Hats: Suppose somebody is trying to learn about privacy, risk, and self-protection. What would be your key takeaways?

Fred Trotter: Well, I think it’s essential to continue to follow the discussions about privacy and digital communication, following you, following me, especially if we talk or get together. This is an area of shared interest. Every time we get together, we talk about this. Following the EFF is essential. I think following The Light Collective, and when I say follow, I mean, like in the podcasts from the people associated with those organizations talking about these topics.

Health Hats: So, awareness.

Fred Trotter: Situational awareness. I think there will be a lot of QWERTY keyboard stuff where a technical decision seems like a good idea at the time, but it has negative long-term impacts when technology gets locked in. In the next ten years, we will make many decisions embedded for centuries, so everybody must be aware and plugged in. I think commenting on regulatory processes is probably more important than participating in political processes because our politics are so broken. There’s a vast number of complex issues that are handed down by CMS or FDA or agencies like that. Paying attention to regulations is good.

Fred Trotter: When I say this, every organization is dysfunctional. So, when I refer you to an organization, then you find out it’s dysfunctional, don’t resent me. That’s the way organizations are. But another organization I think is worth listening to is the Society for Participatory Medicine, which is as close to a patient watering hole as we have, with patients from the various patient communities coming together a little bit. I think they’re worth following.

Fred Trotter: I advise people to try to interact and understand how the significant language models work. Get good if you can at ChatGPT. Learn how the prompting changes things and how these large language models work. Returning to that story, when they first turned the LA large language model on and asked to do chart reviews, it was getting like 50% inter inner rate of reliability, and then they changed the prompts. And they got it up to 85%. So I think there will be programming with an English component, programming with natural language, which will come out of the prompting of these languages. And that will be a new skill that will help me follow the conversation and understand. I think that’s a good thing.

Fred Trotter: If you have an issue where you are concerned that someone will use information against you, they will shame you systematically or make judgments against you, be careful. Think carefully about how you and your information flow and who has the information and who doesn’t. I think two approaches work there. One is to try to make sure the information doesn’t leave. But I would also say the way it should work is that just because you have the information go out, you can fight against the injustice in the judicial and extra-judicial processes and reduce harm. That is as important as we need people who are saying, yeah, I have my colostomy bag, and I’m not going to allow my workplace to use that to discriminate against me. I will be loud and annoying about that – the Mighty Casey approach – and we need people trying to protect their privacy. We also need people saying that just because you have information doesn’t mean you get to use it against me. So, we need people who are fighting and trying to get out of the fight and the people who are trying to get into the fight regarding information being used against you.

Health Hats: I want to tell you a swift story. I have a 12-year-old grandson, and we get together for an hour every Sunday. We’ve been doing this since 2019. This time, we were playing with DALL.E, the AI graphic, trying to get it to draw a decent anime picture. We tried all sorts of ways to say what we wanted, being general, changing what the picture was about, and putting in certain styles of anime to replicate if it was watercolor versus photos. According to my grandson, it was all garbage and did not reflect any decent anime. So, I’m telling that story because we think a lot about AI and words, but there are also images.

Fred Trotter: That’s important. Let’s generalize as far as we can go. I think the future will be that an AI will be something you can talk to because that’s how you talk to communicate. It’s either in writing or spoken words. I think it will spread to the point where AI either badly or correctly imitates almost any human creativity. So, I want a song that sounds like this. I want a picture that looks like this. I want a video that depicts this. I want a novel. I want something printed, something sewn. I think there’s a massive space for machines doing creative work. The other side of that coin is that every time you ask the app to do that, it’s violating the privacy of everyone who did the art. And I’m not sure that privacy is the right way to say that, but you’re certainly taking from creators.

You’re prompting, but then AI is outsourcing creativity by aggregating creativity. I’m going to look at a thousand pictures or sewings. I’m going to take the creativity of a vast number of people, reverse engineer it, and then produce something for you that is, in some senses, creative. But it’s not clear to the degree that it’s de novo creative versus creative in the way that it’s just aggregated imitation. It’s not clear what that means.

Fred Trotter: It’s so complicated like this: the people who believe that AI will make people more productive. I think they’re woefully uninformed, and they are Pollyannish. Is that the right way to say it? It’s just dangerously hopeful.

Health Hats: Thanks, Fred.

Fred Trotter: All right.

Health Hats: We’ll have to do this again. Thank you so much.

How long of a shelf life will this conversation have? The tension between community, learning, safety, shame, and technology, however you define them, will never cease.  Significant changes in technology have unexpected ramifications. Imagine life before and after the introduction of fire, the wheel, the printing press, penicillin, light bulbs, the telephone, contraception, and batteries. All predating computers are affecting privacy, fear, shame, and connection.

I appreciate Fred’s insistence on considering definition and context when discussing privacy, harm reduction, health equity, and justice. I can’t imagine a tribe without justice inequity. The concept of Artificial Intelligence as the rapid aggregation of human creativity is so seductive. Should I open my heart to that seduction a little bit, a lot, or not at all?

Perhaps Fred and I should have this conversation again in a year or two.

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band.

I buy my hats at Salmagundi Boston and my coffee from the Jennifer Stone Collective. Links are in the show notes. I’m grateful to you who have the critical roles of listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies.   As mentioned in the podcast: drink water, love hard, fight racism

Andrea Downing, Jill Holdren, Valencia Robinson, Ken Goodman, Virginia Lorenzi, Michael Mittelman

Today’s guest, Fred Trotter, co-authored the seminal work Hacking Healthcare

The Light Collective

embrace pseudonymity

EFF Electronic Frontier Foundation

Imagine life before and after the introduction of fire, the wheel, the printing press, penicillin, light bulbs, the telephone, contraception, and batteries. All predating computers and affecting privacy fear, shame, and connection.

https://health-hats.com/bioethics-autonomy-for-me-on-behalf-of-me/

https://health-hats.com/pod168/

https://health-hats.com/safe-living-in-an-epidemic/

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