Kirk & Lacy on shifting research funding away from federal grants: what happens to community partnerships when the money—and the rules—change?

Summary

Three Audiences, One Report Lacy Fabian and Kirk Knestis untangle a fundamental confusion in community health research: there are three distinct audiences with competing needs—funders want accountability, researchers want generalizable knowledge, and communities want immediate benefit. Current practice optimizes for the funder, producing deliverables that don't help the people being served. The alternative isn't "no strings attached" anarchy but rather honest negotiation about who benefits and who bears the burden of proof. Kirk's revelation about resource allocation is stark: if one-third of evaluation budgets goes to

Click here to view the printable newsletter with images. More readable than a transcript.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Substack

Patreon

Production Team

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

Leon van Leeuwen: editing and site management

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection

Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Podcast episode on YouTube

Inspired by and Grateful to: Ronda Alexander, Eric Kettering, Robert Motley, Liz Salmi, Russell Bennett

Photo Credits for Videos

Data Party image by Erik Mclean on Unsplash

Pendulum image by Frames For Your Heart on Unsplash

Links and references

Lacy Fabian, PhD, is the founder of Make It Matter Program Consulting and Resources (makeitmatterprograms.com). She is a research psychologist with 20+ years of experience in the non-profit and local, state, and federal sectors who uses evidence and story to demonstrate impact that matters. She focuses on helping non-profits thrive by supporting them when they need it—whether through a strategy or funding pivot, streamlining processes, etc. She also works with foundations and donors to ensure their giving matters, while still allowing the recipient non-profits to maintain focus on their mission. When she isn’t making programs matter, she enjoys all things nature —from birdwatching to running —and is an avid reader.

Lacy Fabian's Newsletter: Musings That Matter: Expansive Thinking About Humanity's Problems

Kirk Knestis is an expert in data use planning, design, and capacity building, with experience helping industry, government, and education partners leverage data to solve difficult questions. Kirk is the Executive Director of a startup community nonprofit that offers affordable, responsive maintenance and repairs for wheelchairs and other personal mobility devices to northern Virginia residents. He was the founding principal of Evaluand LLC, a research and evaluation consulting firm providing customized data collection, analysis, and reporting solutions, primarily serving clients in industry, government, and education. The company specializes in external evaluation of grant-funded projects, study design reviews, advisory services, and capacity-building support to assist organizations in using data to answer complex questions.

 Referenced in episode

Zanakis, S.H., Mandakovic, T., Gupta, S.K., Sahay, S., & Hong, S. (1995). "A review of program evaluation and fund allocation methods within the service and government sectors." Socio-Economic Planning Sciences, Vol. 29, No. 1, March 1995, pp. 59-79.

This paywalled article presents a detailed analysis of 306 articles from 93 journals that review project/program evaluation, selection, and funding allocation methods in the service and government sectors.

Episode

Proem

When I examine the relationships between health communities and researchers, I become curious about the power dynamics involved. Strong, equitable relationships depend on a balance of power. But what exactly are communities, and what does a power balance look like? The communities I picture are intentional, voluntary groups of people working together to achieve common goals—such as seeking, fixing, networking, championing, lobbying, or communicating for best health for each other. These groups can meet in person or virtually, and can be local or dispersed. A healthy power balance involves mutual respect, participatory decision-making, active listening, and a willingness to adapt and grow.

I always listen closely for connections between communities and health researchers. Connections that foster a learning culture, regardless of their perceived success. Please meet Lacy Fabian and Kirk Knestis, who have firsthand experience in building and maintaining equitable relationships, with whom I spoke in mid-September.

This transcript has been edited for clarity with help from Grammarly.

Lacy Fabian, PhD, is the founder of Make It Matter Program Consulting and Resources. She partners with non-profit, government, and federal organizations using evidence and storytelling to demonstrate impact and improve program results.

Kirk Knestis is an expert in data use planning, design, and capacity building. As Executive Director of a startup community nonprofit and founding principal of Evaluand LLC. He specializes in research, evaluation, and organizational data analysis for complex questions.

1. Introductions & Career Transitions

Kirk Knestis: My name's Kirk Knestis. Until just a few weeks ago, I ran a research and evaluation consulting firm, Evaluand LLC, outside Washington, DC. I'm in the process of transitioning to a new gig. I've started a non-profit here in Northern Virginia to provide mobile wheelchair and scooter service. Probably my last project, I suspect.

Health Hats: Your last thing, meaning you're retiring.

Kirk Knestis: Yeah, it's most of my work in the consulting gig was funded by federal programs, the National Science Foundation, the Department of Ed, the National Institutes of Health, and funding for most of the programs that I was working on through grantees has been pretty substantially curtailed in the last few months.

Rather than looking for a new research and evaluation gig, we've decided this is going to be something I can taper off and give back to the community a bit. Try something new and different, and keep me out of trouble.

Health Hats: Yeah, good luck with the latter. Lacy, introduce yourself, please.

Lacy Fabian: Hi, Lacy Fabian. Not very dissimilar from Kirk, I've made a change in the last few months. I worked at a large nonprofit for nearly 11 years, serving the Department of Health and Human Services. But now I am solo, working to consult with nonprofits and donors. The idea is that I would be their extra brain power when they need it.

It's hard to find funding, grow, and do all the things nonprofits do without a bit of help now and then. I'm looking to provide that in a new chapter, a new career focus.

Health Hats: Why is this conversation happening now? Both Kirk and Lacy are going through significant changes as they move away from traditional grant-funded research and nonprofit hierarchies. They're learning firsthand what doesn't work and considering what might work instead—this isn’t just theory—it's lived experience.

2. The Catalyst: Why This Conversation Matters

Health Hats: Lacy, we caught up after several years of working together on several projects. I'm really interested in community research partnerships. I'm interested in it because I think the research questions come from the communities rather than the researchers. It's a fraught relationship between communities and researchers, often driven by power dynamics. I'm very interested in how to balance those dynamics. And I see some of this: a time of changing priorities and people looking at their gigs differently —what are the opportunities in this time of kind of chaos, and what are the significant social changes that often happen in times like this?

3. The Ideal State: Restoring Human Connection

Health Hats: In your experience, especially given all the recent transitions, what do you see as the ideal relationship between communities and researchers? What would an ideal state look like?

Lacy Fabian: One thing I was thinking about during my walk or run today, as I prepared for this conversation about equitable relationships and the power dynamics in this unique situation we're in, is that I feel like we often romanticize the past instead of learning from it.

 

I believe learning from the past is very important. When I think about an ideal scenario, I feel like we're moving further away from human solidarity and genuine connection. So, when considering those equitable relationships, it seems to me that it's become harder to build genuine connections and stay true to our humanness. From a learning perspective, without romanticizing the past, one example I thought of is that, at least in the last 50 years, we've seen exponential growth in the amount of information available. That’s a concrete example we can point to. And I think that we, as a society, have many points where we could potentially connect. But recent research shows that's not actually the case. Instead, we're becoming more disconnected and finding it harder to connect. I believe that for our communities, even knowing how to engage with programs like what Kirk is working on is difficult.

Or even in my position, trying to identify programs that truly want to do right, take that pause, and make sure they aim to be equitable—particularly on the funder side—and not just engage in transactions or give less generously than they intend if they'

Your health data belongs to you—but how can you share it safely? Fabienne Bourgeois, MD, exposes the complex truth about privacy, permissions, and data control.

Summary

According to Fabienne Bourgeois, MD, patients want control over their health data, but privacy preferences and constant changes complicate this. The discussion is relevant to people with disabilities, caregivers, and others navigating complex health information. About 80% of people share common privacy concerns that current systems can't address. The remaining 20% need more detailed controls and customization, though balancing autonomy with privacy remains challenging. Ownership means individuals have the right to participate in research and make informed choices. They need "digital intermediaries"— professionals who assist with data sharing—and genuinely intuitive interfaces. Privacy protections must remain a top priority as health and AI tools continue to develop.

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

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Substack

Patreon

Production Team

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

Leon van Leeuwen: editing and site management

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection

Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Podcast episode on YouTube

Inspired by and Grateful to: 

Alexis and Sara Snyder, Amy and Morgan Gleeson, Fatima Mohammed Ighile, Esosa Ighile, Jill Woodworth, Tomas Moran, Marianne Hudgins

Photo Credits for Videos

80/20 by Austin Distel on Unsplash

Design flaws by Getty Images on Unsplash

Privacy by Hector Reyes on Unsplash

Links and references

Fabienne Bourgeois, MD LinkedIn and Publications

National Center for Medical Legal Partnerships

Episode

Proem

The slogan, “Give Me My Damn Data,” began in 2009 with E-Patient Dave DeBronkart as a call for transparency and control: patients arguing that real involvement in their healthcare needs open access to their personal health information. But once we have our data, what will we do with it? Who will we share it with, and in what situations? What are the personal and technical challenges of managing that sharing? I know enough to be dangerous about data-sharing technology. I do understand the personal and relationship sides of data sharing, though. To learn more, I reached out to my former colleague, Fabienne Bourgeois, an Adolescent Medicine doctor and Associate Chief Medical Information Officer (ACMIO) at Boston Children’s Hospital. Fifteen years ago, we worked together, learning from emerging adults about their worries and issues with data sharing. We enjoyed catching up and reviewing the current landscape.

For my followers who prefer the written word, this transcript has been lightly edited and organized for readability.

When Life Throws Your Kid a Curveball

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

Fabienne: Oh, that started pretty early on in medical school. I had some very transformative interactions and experiences with patients and families during my medical school rotations, particularly in pediatrics, which really led me to pursue a career in pediatrics. But there really were some extraordinary families. And it just became very apparent that things could change very quickly and that patients and parents were managing patients with really chronic conditions. Regularly, something could change—really change —and we had to be very vigilant about everything. And the families, in particular, were the most vigilant about their child's care.

Emerging Adults Matter

Health Hats: When I met you, I think we bonded over the adolescent advisory team.

Fabienne: That's exactly right. Yes.

Health Hats: I was so impressed by the adolescents' engagement and how many of their observations were incorporated into the process and design. I found it to be a model for me. When I went to work for Advocates, Inc. in Framingham, which supported 40,000 people with disabilities, there were a lot of similar issues in terms of a continuum of cognitive, judgment abilities, communication abilities, and styles, and the challenge of understanding their preferences and their challenges, and then hard-wiring that into real life. What you did was open my eyes to a world that I wasn't aware of before that. I was so impressed by the adolescents' engagement and how many of their observations

Your Medical Records Called—They're Lost and Separated

Health Hats:  Now that I've evolved to where I am now of the big project I'm working on is we're developing a health data bank a receptacle for individuals to store any and all of their health slash medical data, whether it's EHR claims PDF preferences journals so that then people could authorize the use of their data using a combination of private and public large language models to query that ever expanding and changing data set we're in the really early stages of seed money. And I'm like, act you're successful, right? Because when you are successful, it's bang. It seems to me that the reason I wanted to talk to you was that I see the challenges that emerging adults face in terms of their preferences, rights, and safety as analogous — maybe not the same, but analogous — to language, relationships, and cognition, and that it's fluid. It's not like you set some standards. Because every situation is different at a different minute. So, I'll shut up.

One Size Fits All? Please!

Fabienne: No, you're exactly right. You've hit the nail on the head. It's precisely what we are working on and trying to help because it's very nuanced. And what's very important is to understand that each patient is an individual, and each individual has particular preferences about who they want to share their information with. And that may be within their family unit or outside it. And we have to honor their privacy preferences. We discuss this particularly in the pediatric and adolescent populations because there are specific state laws and conditions under which adolescent patients can seek care without parental consent.

Spoiler: This Affects Way More People Than You'd Think

Fabienne: In those situations, we really make sure we maintain privacy in line with the individual adolescent's preferences. But you're absolutely right that this extends beyond the adolescent population. We see this often with patients with disabilities or with older adults who have other caregivers or other people who are proxies to their patient portal. So, they're sharing their information with others, and there's certain information they don't necessarily want to share with everyone. And they entrust us with deeply personal information. And they want us to really take care of that information and keep it confidential if they choose to keep it confidential. Sometimes they really just want that conversation to be between them and their care team or their provider specifically. So you're exactly correct. This really extends beyond the adolescent population.

Can We Teach Tech to Understand 'It's Complicated'?

Health Hats: When I break that down, I think the challenge of taking a pulse, meaning where do they stand at this moment? What do they understand are the nuances or the implications of their decisions? So it's an understanding of life and self. Then there's the technical of how. How does that get hardwired into something? And then there's the interface, so people can go from their understanding, click a few buttons, and get what they want. And so it seems to me that you're in the middle of all of that and that you can't do your job if you don't have excellent teams that can do, not necessarily everybody, but the whole team has to be able to deal with all of that.

Fabienne: Yes, you're exactly right. And it's tough. It's very challenging. We're lucky to have a very strong team in our IT department working on all of these things. But we're also dependent on the restrictions, capabilities, and functionalities that vendors have in their electronic health records and in the health information exchanges. And I think you noted this previously as well. There's an explosion in the interoperability space, where we're not just talking about sharing information with patient portals and proxy-to-patient portals, but across health information exchanges. So, we're sharing across institutions and, increasingly, with mobile health applications.

All-or-Nothing Privacy: The Sledgehammer Approach

Fabienne: And all of those have slightly different challenges in how that information is shared and safeguarded within those applications. And then also how individuals can provide preferences for which information is shared. And you're exactly right: the technical part of this is just as complex as the nuances of the policies, the preferences, the regulations, et cetera. And in some cases, there just isn't quite the granularity in information segmentation we need to really provide the appropriate preferences for patients and families. So sometimes it's a very blunt object. We say this note contains confidential information, so no part of it will be shared anywhere. And we lose a lot of critical, valuable information that we would like to share with families and other providers, or that could be beneficial to an app. It's a very complex challenge. You're exactly right.

Health Hats: Gimme an example. I'm hearing what you say. Because people often talk about everything,...

Healthcare AI isn't a tech problem—it's a mirror reflecting how our health system already fails. Uncomfortable truths from Datapalooza 2025.

Summary

We're asking the wrong questions about AI in healthcare. Instead of debating whether it's good or bad, we need to examine the system-eating-its-tail contradictions we've created: locking away vital data so AI learns from everything except what matters most, demanding transparency from inherently secretive companies, and fearing tools could make us lazy instead of more capable. Privacy teams protect data, tech companies build tools, regulators write rules—everyone's doing their part, but no one steps back to see the whole dysfunctional picture. AI in healthcare isn't a technology problem; it's a mirror reflecting how our health system already falls short with privacy rules that hinder progress, design processes that exclude patients, and institutions that fear transparency more than mediocrity. The real question is whether we're brave enough to fix these underlying problems that AI makes impossible to ignore.

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

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

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

Leon van Leeuwen: editing and site management

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection

Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Podcast episode on YouTube

Inspired by and Grateful to: 

Christine Von Raesfeld, Mike Mittleman, Ame Sanders, Mark Hochgesang, Kathy Cocks, Eric Kettering, Steve Labkoff, Laura Marcial, Amy Price, Eric Pinaud, Emily Hadley.

Links and references

Academy Health's Datapalooza 2025  Innovation Unfiltered: Evidence, Value, and the Real-World Journey of Transforming Health Care

Tableau  a visual analytics platform

Practical AI in Healthcare podcast hosted by Steven Labkoff, MD

Episode

Proem

Here's the thing about AI in healthcare—it's like that friend who offers to help you move, then shows up with a sports car. The Iron Woman meant well, but it doesn't quite meet your actual needs. I spent September 5th at Academy Health’s 2025 Datapalooza conference about AI in healthcare, 'Innovation Unfiltered: Evidence, Value, and the Real-World Journey of Transforming Health Care. a is Academy Health’s strongest conference for people with lived experience. I’m grateful to Academy Health for providing me with a press pass, which enabled me to attend the conference.

I talked to attendees about how they use AI in their work and what keeps them up at night about AI. I recorded some of those conversations and the panels I attended. When I listened to the raw footage, I heard terrible recordings filled with crowd noise and loud table chatter, like dirty water spraying out of a firehose. Aghast, I thought, what is the story here? I was stumped. How can I make sense of this? I had to deliver something.

So, here’s how I use AI in my work as a podcaster/vlogger. I used the Auphonic app to clean up the audio and remove noise, and then the Descript app to create transcripts of all the recordings. I went into my Claude podcast Project (a Project is an ongoing thread with everything I’ve done with Claude for my podcast over the past three months). I attached the transcripts and prompted the AI platform to identify themes. OK, that was helpful, but dull. So, I prompted Claude to think like a tech-savvy teen with a sense of humor. Eureka! Now we’re getting somewhere. I edited heavily and then prompted Claude to identify clips of speakers that illustrated the themes. I used the Perplexity app for research. Finally, I did the last written edit with a polish from the Grammarly app.

For audio, I returned to the Descript app, found the recommended clips, and extracted them. Then I recorded a video of myself, again using Descript. Compilation editing of the video was done with the DaVinci app. I should give production credit to Auphonic, Claude, Descript, Grammarly, Perplexity, and DaVinci.

Paradox, Irony, Catch 22

Datapalooza 2025 showcased the health and care industry’s intense focus on Artificial Intelligence, whatever that means. My podcast acts as a Rosetta Stone to share the excitement of what I learn and deem important in my journey toward best health. How can we use AI safely? Let’s jump in with some lessons I learned.

Burying the Treasure to Keep It Safe

There’s a Data Privacy Paradox. The very health data that could benefit most from AI faces the most restrictions. Sushmita Macheri works with Medicare/Medicaid data—information about some of our most vulnerable populations—but can't use AI to identify errors that could improve their care. Meanwhile, commercial entities are freely training AI on whatever data they can scrape. Therefore, the most sensitive and valuable healthcare data remains locked away while AI trains on potentially biased and unrepresentative information.

Sushmita Macheri:  I work with healthcare, Medicare, and Medicaid data. I would like to upload the data so I can understand what errors I'm getting, but I'm unable to do that due to the restrictions we have at work. So, if I were able to upload one, let's say, like a file that I am having errors with.

Health Hats: So, what kind of errors, like missing data, what are the errors that you notice?

Sushmita Macheri: I work with Tableau, mostly.  Sometimes, if I'm having issues with a calculated field, I would like to upload that calculated field or the logic behind it in the calculator to try to understand what the error is, but I'm unable to do so. For me, it’s the biggest challenge.

Bias, Treating the Chart, Not the Patient

Bob Stevens points out a harsh irony: AI makes decisions about patients while being trained on data that intentionally excludes patient perspectives. The people most affected by AI decisions had the least input in training the systems. It's like having a medical advisory board that leaves out doctors and patients, then questioning why the recommendations fail.

Bob Stevens: I am concerned about bias, as I mentioned, and that really worries me for two reasons. First, AI uses all available content, and as patients, we know that patient perspective content has not been well represented. Now, as AI starts making decisions based on this, all the content it has is just what's available. It's gathering it all. We haven't been well represented in that process. So, it's going to stay biased, right? Without patient information and the patient perspective, that creates a bias.

Bob Stevens: The second type of bias is related to how it's designed. It's not being general because it's a technology, while they're asking for patient input. There's also bias in the design process because of who is doing the designing. So, you have two levels. One can be considered intentional, but the other is the accumulation of all this data that is there. We're not represented in and haven't been represented in. And how do we change that? The incremental change in the AI dataset is expected to take decades. What bothers me is that we are now relying on AI to assign a label that can then trigger a response or action.

Bob Stevens: That's a high-risk moment, asking AI to make a decision that's inherently high-risk. So what AI should always do is say. Here's what I see. Now consider this when going in. And that brings us to the second part of a PCORnet study that I was involved in, which focused on the ER.  And we had our electronic health record, and depending on how certain things, it was called a natural language processing process. And it looked at all these different things, and then based on that, it said, look to this, or looked to that, or looked to the other.  It was those AI prompts that were based on the information from the electronic health record, which was then entered into the electronic health record. For that physician in the ER, they would then need to do certain things.

Circular Dependence, Chasing Your Tail

Rolanda Clark hits on something profound: we need expertise to verify AI, yet AI is supposed to democratize expertise. She notes you "still have to educate yourself on how to check the information," but if you already have that expertise, why do you need AI? And if you don't have the expertise, how can you verify it? It's a circular dependency that reveals AI's limitations rather than its strengths.

Rolanda Clark: So, I'd say with AI, it's not foolproof. You still have to educate yourself on how to verify the information that's being presented, and that's hard to do.

Health Hats: I've started saying, ‘What is wrong with your algorithm?’ Correct. And I get some kind stuff I didn't think about that makes me wanna burrow in more.

Rolanda Clark: But I think that's imperative. I think you must counter to mitigate this like bullshit.

Health Hats: Because you need to do that with experts anyway, because just because they're experts in this little thing, they think they're experts in way more.

Rolanda Clark: Exactly. As a patient advocate, I ask myself, 'Why am I here?’ And then I realize I have common sense, and I can see when it's bullshit. I definitely have value regardless. And you've had experiences that these organizations often don't promote or share because they want to highlight all of the good.

Health Hats: So, transparency? That's an honorable challenge. How do you be transparent, and how do you trust yourself?...

Letters beat emails for trustworthiness. A gullible skeptic reflects on navigating trust in a 50-year marriage, and the energy cost of distrust.

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

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

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

Leon van Leeuwen: editing and site management

Oscar van Leeuwen: video editing

Julia Higgins: Digital marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection

Podcast episode on YouTube

Episode

Dear Listener and Reader,

I thought I’d start writing you letters. I miss letters. I send cards thanking my guests for their participation. People universally appreciate getting something via snail mail. But cards aren’t letters. They’re preformatted notes, where I just change the image and the name.

For giggles, I looked back at my very first blog post, July 31, 2012. It was a paragraph, a letter of sorts, short and simple, Improv and Best Health.

It's taking me longer to produce each episode. So, no more frequently than once a month. So, why not a letter, short and sweet, from time to time?

Let’s start with trust. A letter feels more trustworthy than an email or a tweet. It’s signed; a person who writes a letter really wants to communicate and thinks about what they’re saying. So, perhaps, not a troll, more trustworthy. I always open letters.

My immediate, momentary, default reaction to almost anything is trust. My kids say I’m gullible. My next instant reaction is skepticism. I think about what’s not true about whatever. ‘AI is the solution to everything.’ What do you mean, everything? What is AI anyway? Like that.

I’ve been married for 50 years because at our core, my wife and I trust each other. We disagree, we misunderstand, we anger, I sulk. Yet we trust. On the other hand, I make stuff up. I misremember, create a story, and if it serves my purposes, stick with it or modify it as needed. My wife and grandkids are my fact-checkers. Still, we trust each other.

In my personal life, trust isn’t an on-or-off switch, all or nothing. Well, not usually. It’s a matter of degree; it’s about something. I trust that I can count on you to be there for me, unless you can’t. I trust that you’ll return my call, unless you’re hurt, don’t feel like it, or missed it.

Distrust sucks energy; be more careful with my words, self-censor, close my heart and mind.

I don’t expect to trust everybody or everything. When I do trust, it’s priceless.

Thanks for listening, I’ll be back.

Related episodes from Health Hats

https://health-hats.com/improv-and-health/

https://health-hats.com/pod113/

https://health-hats.com/trust-willing-to-be-vulnerable-worth-the-investment/

Artificial Intelligence in Podcast Production

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

Creative Commons Licensing

CC BY-NC-SA

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

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

   SA: Adaptations must be shared under the same terms.

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

Disclaimer

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

Ronda Alexander on strategies to build inclusive health coalitions, manage power dynamics, center marginalized voices, & design sustainable governance.

Summary

In this episode of Health Hats, host Danny van Leeuwen talks with Ronda Alexander, a community health advocate and skilled facilitator, about the challenges of building and maintaining effective health coalitions. Alexander shares her journey from attending Detroit's innovative Henry Ford Academy to working with Ford Partnership for Advanced Studies on workforce development, ultimately finding her calling at Vital Village Networks in Boston, where she spent seven years supporting national coalitions focused on health equity and early childhood wellbeing.

The conversation explores practical ways to manage power dynamics in cross-sector collaborations, from setting group norms that encourage real participation to designing decision-making processes that balance speed and sustainability. Alexander stresses the critical importance of listening to marginalized communities—those "furthest from opportunity"—and making sure they have real seats at decision-making tables, not just token representation.

Key insights include strategies for inclusive facilitation, such as incorporating quiet reflection time, small group discussions, and developing shared talking points that coalition members can take back to their organizations. Alexander advocates for proactive governance planning, comparing effective coalition building to chess strategy, where groups think "seven to eight moves down the board" to prepare for inevitable challenges.

The episode wraps up with Alexander's call to action for health advocates: start by listening to the communities you want to serve, trust what people tell you about their needs, and design systems that place those most affected by health inequities in leadership and decision-making roles.

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

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

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

Leon van Leeuwen: editing and site managementresil

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

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

Podcast episode on YouTube

Inspired by and Grateful to: 

Jan Oldenburg, Ellen Schultz, Tomas Moran, Susannah Fox, Betsy Neptune, Tania Marien

Links and references

Ronda Alexander

Henry Ford Academy

Henry Ford Museum and Greenfield Village

Ford Partnership for Advanced Studies

Vital Village Network

The Networks of Opportunity for Child Wellbeing

Dr. Renee Boynton-Jarrett

B’More for Healthy Babies

Marginalization refers to the inequality certain individuals face in society due to power imbalances built into our systems.

Episode

Proem

Learn with People on the Journey toward Best Health. That’s my tagline. Let’s break it down. Learn with People implies endless curiosity with the people I travel with. Makes sense, I’m a networking extrovert who learns best with others. I prefer to travel with selected peeps (my team). Best health means accepting current circumstances and maximizing abilities, function, and spirit. So, we’re headed to a relatively better place, or at least the best possible health given whatever circumstances of the moment. A journey typically involves a destination (goals), tactics, and costs. The only guaranteed person on the team is me, you, or us, depending on whether it’s community health. Otherwise, the team is constantly changing. Who’s on the team, who’s off? Travel implies choices. Right, left, up, down, stop, rest, shop, eat. We can’t continue without making decisions together.  Decision-making means power, group dynamics, and trust-governance. I broke all this down to get to governance, small group governance. After 50 years in health care, I’m still a student of governance.  How do we, as mission-driven teams, attain our health goals with the power we possess? How do we collectively nurture healthy group dynamics with transparent and somewhat equitable power?

Just as my next-door neighbor, Ronda Alexander, was about to move, I learned that we shared an interest in community advocacy, governance, and power dynamics. And where was she moving? Back to Detroit—my old neighborhood. Small world. I took the opportunity to record a chat with Ronda before she left.

When did you first realize health was fragile?

Ronda Alexander: It was becoming a parent. When you become a parent, you're responsible for somebody else's health. And up until then, I've been relatively healthy all my life. I had taken it for granted. But I think recognizing that I have this little human that I'm responsible for and have to make sure to keep them healthy, and that was a time when I was like, oh wait, health is, it's tricky. It can change at any moment. My kiddo has nut allergies. They had an egg allergy, and they have asthma. And so, just things I hadn't paid attention to before caused me to think about the environment around me. I think another thing that helped me realize health was fragile was recognizing the interconnection between physical health and the community and environment around you. When I started working for an organization focused on health equity, I learned that the social determinants of health — your community, your environment — have a significant impact on your health. And that answered so many questions for me.

Vital Village Network

Health Hats: Can you tell us about some of the organizations you've been working with?

Ronda Alexander: For the last seven years, up until about two months ago, I worked for an organization called Vital Village Networks, based out of Boston Medical Center. The focus of that organization is health equity and child wellbeing, but from a community leadership standpoint. Upon joining the team, I was responsible for building a national learning community called The Networks of Opportunity for Child Wellbeing, supporting and working with 10 coalitions from across the country across 10 states who were working on various aspects of health equity. We're working on some specific innovations in their communities. Centered on prenatal to eight. So early, early childhood. Moving from preschool to elementary school, what does that mean for families, and what does it look like?

Leadership, Impact, and Measurement

Some coalitions focused on birth equity and birth justice, while others focused on community leadership or community grant-making. They all approached it from different lenses, but one key aspect was conducting research and measuring the impact of their work on their respective communities, as well as examining the collective impact.

In addition to helping them determine what we'll work on together, we also need to figure out how to uplift the folks we're saying we want to help and support, putting them at the center and in positions of leadership and power. We also asked, "What does it mean to measure that, and how do we design systems of measurement together?" We designed survey questions to understand how people would tell stories and what that process looked like, co-designing those evaluation tools.

Data Storytelling

We recognized that research and data can come from a variety of places. It can be stories, it can be numbers, it can be a combination of the two. And that folks in the community, folks most impacted, can have some ownership over that. We often would do workshops on building capacity, helping folks recognize that they have a story to tell, uplifting different kinds of data, storytelling, and using that data, whatever information they wanted to do to impact change, then to say, okay, we're noticing this about our community based on this data. Now, how are we going to respond to it?

Community Research Collaboration

Health Hats: The organization that you worked for was a community-based organization integrated with a research team. Did that originate out of the community? Did that arise out of Boston Medical Center? What was the academic connection?

Ronda Alexander: The founding director of Vital Village Networks, Dr. Renee Boynton-Jarrett, was a pediatrician and a researcher by nature. I launched and founded the organization. First, we're starting by listening to the community and understanding their stories and needs. The organization's three pillars focused on community leadership and design. So, we listen to the community and bring people together. How do we work together? And then, how do we use data as a catalyst for the transformation? As the organization grew, it started to focus very locally in the Boston area. We have grown to have a national arm, which I mentioned earlier. But it also has a research and evaluation arm. So, designing and co-designing research efforts within the community. I was connected to it. I wasn't necessarily doing a lot of that research, but I understood the value and how all those things fit together.

One project I worked on with a coalition in Baltimore, B’More for Healthy Babies, involved conducting research in their community. They were committed to making it community-based and designed in partnership with the community. So, the research and evaluation arm of the organization was then able to support them in doing that.

Funding

Health Hats: So, how was this funded?

Ronda Alexander: So the funding came from private foundations....

Exploring bird flu prevention with farm owner Shannon Hayes. Discover boot washing, flock protection with coyotes, and best practices in biosecurity.

Summary

🎯 The Lede: Bird flu cycles have shortened, forcing farmers like Shannon Hayes to reimagine their biosecurity protocols completely.

Farm owner Shannon Hayes reveals how her family protects their livestock from bird flu at Sap Bush Hollow Farm. Key strategies include washing boots with soap and vinegar solutions, timing poultry purchases for summer months, ending public farm tours, and maintaining coyote populations as natural buffers against wild waterfowl. Hayes emphasizes that bird flu prevention requires continuous practice and adaptation, not perfection. The episode highlights farmers' critical but often overlooked role in biosecurity and food supply protection during disease outbreaks

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

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

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

Leon van Leeuwen: editing and site managementresil

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

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

Podcast episode on YouTube

Inspired by and Grateful to

Sue and Jay Spivack, Jim Donahue, Pat Hultz

Links and references

Sap Bush Hollow Farm

The Hearth of Sap Bush Hollow Podcast & The Radical Homemaker Blog

“Drawing on the Right Side of the Brain” by Betty Edwards,

'Your Local Epidemiologist' Substack by Katelyn Jetelina and Edward Nirenberg

New York State Grown and Certified

Episode

Proem

The only time I felt I could draw was when my Oma was dying. I sketched the outside of her. I had recently read “Drawing on the Right Side of the Brain” by Betty Edwards, which revolutionized art instruction by teaching readers to perceive edges, spaces, and relationships—core skills for realistic drawing. It features exercises in contour and blind contour drawing, emphasizing the importance of drawing what you actually see, not what you think you see. Now, when I’m curious, I want to know the backstory to fill out the edges.

My antennae stirred when reading 'Your Local Epidemiologist' about Bird Flu. The Paramedic and Emergency Nurse personas in me feel anxious. No reports are coming out of the CDC, the aggregation of State infection data has been discontinued, and the administration is comfortable with days-long reaction times to disasters, having defunded and staffed mitigation work. So, look out farther to the edges of bird flu –the front line of people managing flocks of birds. Bird flu is nothing new, but the usual 10- to 15-year interval between epidemics has changed. Bird flu isn’t dying out or going dormant anymore. The CDC is reporting incidents of infection jumping from birds to people. Our federal government seems unprepared - danger, danger, danger. I know so little, and I’m scared. Not a healthy mix.

Podcast intro

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

Introducing Shannon Hayes

Fortunately, I have a dear friend, Shannon Hayes, owner and CEO of Sap Bush Hollow Farm in Upstate

New York - West Fulton. Shannon and I met 25 years ago when my wife and I were buying lamb, chicken, turkey, and eggs from her parents. Shannon podcasts, too. Warm, humorous, informative: The Hearth of Sap Bush Hollow Podcast & The Radical Homemaker Blog. I recommend them.

 

This conversation with Shannon took place in February of 2025. Shannon is informed, humble, and eager to share.  I’ll cut in a couple of times. Not because Shannon’s tale needs a drop of translation or background. But I’ve learned more from these words each time I’ve touched them in production. I needed a second to digest what I just heard. I’ll do that aloud with you. Appropriately, we jumped right in talking about shit, bird shit.

Shannon: Men are allowed to use that term without any problem, but women are looked at as being foul if they use it. However, I'm now 51 years old and I couldn't give a shit. That's so funny because that is the language. That we use. You don't say there's fecal matter. You don't leave there's manure. It's fast, it's effective. It's what it is.

Health Hats: Is a cow shit called something different than chicken shit?

Shannon: No, shit is shit. We identify species, then shit.

Health Hats: Okay. All right. That's good to know.

Shannon: Hi, Danny. How are you? Good. I'm glad to see your saxophone.

Health Hats: I was thinking about how we met. I met your mom first. Because we were customers, we met you on the farm? Because we did. I thought you were in school or something.

Shannon: I've been with Sap Bush Hollow since 1979, when we moved there. But I went away to college. I met you when I was still in grad school. So, I used to help when college was out for the season, then for the summer. And then, when I started grad school at Cornell, my mom was handling all the sales through the farm kitchen. Then I came home every time there was a sale. I also came home every weekend. And, helped on the farm. So yes, it was a big event. She would've had to be back there in time to help. Big event with the chicken pickups. Oh yeah. Yeah. And lamb. Yep. A lot of lamb.

Health Hats: A lot of lamb.

Shannon: That's still the centerpiece at Sap Bush Hollow. We do lamb better than anybody else. Our lamb is the best.

Health Hats: Shannon, please introduce yourself.

Shannon: I'm Shannon Hayes, and I'm now the CEO of SAP Bush Hollow Farm, which my parents founded in 1979.

Health Hats: You're located in upstate New York.

Shannon: We are located in West Fulton, New York. Anyone from West Fulton is very proud to tag that onto our name because nobody else knows where it is. But it's in West Fulton, New York, which is in Schoharie County. That's about 45 minutes west of Albany.

Bird Flu: Context and History

Health Hats: The reason is that you and I have been talking. I was particularly interested in your blog post about bird flu. The reason for my interest was that there's often a lot of abstract talk about bird flu, and there's a lack of epidemiological information about it. I appreciated your discussion of the topic on your blog. Oh, and what's your blog called?

Shannon: It's https://theradicalhomemaker.net. You can also find it at https://sapbushfarmstore.com.

Health Hats: Okay, thank you. Anyway, I found the concept of having protocols for safety to be intriguing. So, can you explain what that means in terms of establishing protocols for safety against bird flu? Because obviously you have a flock.

Shannon: I'm going to give you a little bit of a historical context first. You came into the circle of Sap Bush Hollow at a time when farmers were really trying to reach out and connect very deeply with the public. And you were one of the leaders in the farm-to-table movement. As far as I can tell, you were one of the original people who decided it was worth connecting directly with farmers. That was a time, and the expectation of small, local sustainable farmers is that our lives, we were all told, had to become an open book.

We needed to be very transparent in what we did and invite the public in to see what. We were all about it, so they could learn to trust us, because everyone thought that if you wanted safe food, you had to go to a grocery store. They had to learn to trust the farmer, as well as trust us as people. And you were one of the leaders in moving forward and saying, 'Let's break this barrier.' Let's get to know the farmer directly. And that's how you started stepping foot on SAP Bush Hollow Farm.

Health Hats: I wasn’t a pioneer. I was a back-to-the-land hippie living in rural West Virginia in an intentional community (commune), more rural than West Fulton. We kept chickens, bees, and, for a brief period, goats and a horse. We were used to getting our meat locally. We were excited to discover Sap Bush Hollow in upstate NY.

An Ecosystem for Biosecurity

Shannon: However, before that time, my dad, who was a professor of agriculture, used to always talk to us about biosecurity and closing the farm loop. We always have to think about biosecurity in terms of if you bring an animal on, you don't want to bring disease onto your farm.

So, for example, we don't bring other people's boars onto the farm. We artificially inseminate the pigs. You try to, we call it keeping the loop closed. You try to keep the farm as an ecosystem. This era in American history, in which small farmers opened up their land and welcomed people onto it, marked a departure from the closed-loop system. But it was great. It was a way to connect with customers and build relationships. But I'm gonna say the dirty word that we're not supposed to say anymore. Climate change and diseases were real issues. When COVID-19 emerged, biosecurity was ingrained in our nature because we had always had to consider this before many of the COVID-19 protocols for farmers, who had been in farming long before we understood what this meant in terms of maintaining their ecosystem and living within it....

MS patient turned healthcare disruptor shares why your biggest "problem users" are actually your most valuable system improvers.

Summary

🎯 The Lede: Collaborate with patients, caregivers, and clinician partners to develop tools that truly inform health decisions.

From a reluctant keynote speaker who prefers hallway conversations comes wisdom about transforming healthcare through authentic partnership. At the American Nursing Informatics Association conference, Danny van Leeuwen shared how his MS diagnosis led to a revolutionary approach with his neurologist: "You don't know anything about multiple sclerosis, but I don't know anything about you."

Key Insights:

Healthcare hackers aren't criminals—they're your most dedicated users finding creative workarounds

Collaboration is about power dynamics; the more you hoard power, the less you can truly partner

Everyone needs to be at the table: patients, caregivers, AND clinicians

Aim for a .300 batting average—failing more than succeeding, but keep swinging

The secret sauce? Bobbleheads on his desk representing different audience personas, grandsons who told him to stop burying the lede, and the understanding that making healthcare decisions is like renovating a kitchen—endless choices requiring trusted partners.

Ready to take one more step in collaboration?

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

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

You know who you are. I'm grateful.

Podcast episode on YouTube

Inspired by and Grateful to

Mark Heyward Johnson, Kristina Moran, Leon and Oscar van Leeuwen, Michael Chaffin, Josef Chlachula, Tom Trainer, Pegret Harrison, Fred Gutierrez, Jeff Horner, CA Stockwell, Wendy Coad, Bob Lecher

Links and references

American Nursing Informatics Association

Susannah Fox

Episode

Proem: A Reluctant Keynote Speaker’s Confession

A confession: I'm a keynote speaker who’s ambivalent about keynote speeches. Give me the hallway conversations, the poster sessions, and the coffee-break connections—that's where my unexpected learning happens. But when my friend and podcast guest, Mark Heyward Johnson, invited me to speak at the American Nursing Informatics Association conference in New Orleans, I faced a delicious challenge: how do you transform a formal presentation into the kind of authentic exchange that changes how people approach their work?

Grandkid Wisdom

The answer, it turns out, lies in the space between listening and action—and in the wisdom of my two teenage grandsons, who advised me to stop burying the lede and use fewer words on my slides, along with my international colleagues who offered expertise in honing audience engagement through storytelling and keeping the focus on the ask.

Lead with the Lede

The conference took place at the end of March. I received the full professional multimedia recording of the presentation in mid-May, and I’m starting the episode production in early June. Before I can create a lede introducing the episode, I need to clarify its purpose. What action do I hope readers, listeners, and viewers will take after consuming this content?

The lede for the presentation is:

Collaborate with patients, caregivers, and their clinician partners to develop and evaluate tools that inform health and care decision-making.

So, is my purpose to share the recording of the presentation and hope podcast consumers take one more step in partnerships? Or is the process of creating a presentation more valuable to my followers? Can I do both?

Podcast intro

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

Prepare for Action

What is my ambivalence about attending and speaking at conferences? As an attendee, I want to learn a nugget and leave inspired to take a specific action that could alter my path. When I listen, I silence my inner voice that asks, ‘How does this affect me?’ What do I want to say? So what? However, as a patient/caregiver partner and advocate, listening is the beginning. What did I hear and learn? How does that connect to other ideas and people? How can I adjust? Real change happens when I shift my habits one step at a time.

I had six months to prepare. As a world-class networker, I engaged others in the development of my presentation. My grandsons and international colleagues, who weren’t experts in my topic but were knowledgeable about communicating with diverse audiences, leading to action.  They asked me what I wanted attendees to leave with: curiosity, connection, energy, and perhaps, take one more step in collaboration. We discussed using a multimedia approach, keeping the audience engaged, and managing a hybrid conference (in-person and virtual).

This episode focuses on collaborating with patients, caregivers, and their clinician partners to develop and evaluate tools that inform health and care decision-making.

Start with Self-Knowledge

I'm a two-legged, cisgender, old white man of privilege who has MS. I've been a care partner to my grandmother, my mother, and a son's end-of-life journey. I'm a nurse. I have led several EHR implementations. I've held the C-suite position of VP of Quality Management in healthcare and have also consulted. I wear a lot of hats, hence. Health Hats.

MS Detective: Dr. Sherlock

So, when I was diagnosed with secondary progressive MS, my neurologist said, "you don't know anything about multiple sclerosis." I know a lot about multiple sclerosis, but I don't know anything about you. Your job is to learn about multiple sclerosis, and my job is to learn about you. I thought I had died and gone to heaven. Then he said, "okay, so when you come back, I want you to tell me what's important to you." I talked to my wife and kids, and I returned with the idea that I want to progress as slowly as possible. I want to stay safe. I want to keep playing my saxophone, and I don't want to interfere with my pathological optimism. He said, "we can work with that."

Activists, Disruptors

As you can probably tell, I'm an activated patient, and you may be one too. You're certainly an activated informaticist, or you wouldn't be here. Activated people are disruptors. And they are most likely to use the products that you work on, and they're going to make 'em better. The rest of this presentation will help you understand what it is, assess the current situation in your shop, and then you can decide what to do next and how to adapt.

The Bottom Line

The bottom line here is that we're beginning right now with self-knowledge. You learned a little bit about me. You've just learned a little bit about each other. We're going to focus on the triads of deciders patients, caregivers, and their clinician partners. We're going to appreciate people who hack healthcare; we're going to talk about engagement as a dynamic of power. We're going to think about the infrastructure that collaboration operates within. And I'm going to encourage you to take one more step in your collaborations.

Health and Care Decisions, Like Kitchen Renovation

Making decisions in healthcare is a lot like putting in a kitchen. There are endless decisions to make: the cabinets, the workflow, the appliances, and the hardware. Are you going to use gas or electricity? Your budget versus what you want. In healthcare, making informed decisions about health and care is a similar process. My wife and I made decisions about our kitchen together, which really meant she made the decisions, and I cared about a few things. I cared that the heavy things were low. I cared about the lighting, and I wanted to ensure we had the best hardware possible, as well as plenty of room to move around. But otherwise, she made all the decisions. And it's like making healthcare decisions. I vetted, and I trust my wife and my partner clinicians. Except for a few things that are important to me, I'm happy for them to make the decisions. There are just too many, and it's based on the things I said before. I want to keep playing my saxophone. I want to stay safe; I don't want to mess with my pathological optimism.

However, as informaticists, we don't know who is making the decisions. The work we do needs to benefit all those people, for that whole triad.

Bobbleheads of Informaticists

We’re all informaticists. I believe in bobbleheads. These bobbleheads you see here are visible from my desk. Bobbleheads are essential because they give me an idea of who my audience is when I'm doing my work. It's like, who's my audience? You might think of them as personas or use cases.

The diversity of people is just incredible. I find it helps me to think about Bobbleheads, and so there's Scarecrow: if I only had a brain. Informaticists develop clinical decision support systems. Some of you know Rosie the Riveter. My mother-in-law was a Rosie the Riveter. She worked in an automobile plant in Buffalo. Rosie the Riveter is about worker empowerment. And they train healthcare staff on new technologies. Then you have Sheri, the Avenger. My grandkids introduced me to Sheri the Avenger,  based on a Marvel comic, and James Bond character Q as a tech-savvy princess. Sheri implements and optimizes electronic health records. Finally, there's Dana Scully, an FBI agent in the X-Files, and she's about hard science. She's a skeptic, and then when she agrees, she's all in. Now we have a sense of who we are.

In Defense of Healthcare Hackers,...

These families created a pandemic pod with clear rules & shared childcare. While adults navigated anxiety, their kids called it "the best time of their lives."

Summary

Bevin Croft and David Weintraub talk about their experience forming a "pod" during the COVID-19 pandemic.

Health Hats introduces participatory governance - a concept I’ve studied throughout my life in various contexts, including families, communities, organizations, and healthcare. My history with governance spans from 1968, through college activism, homeschooling my children, living in an intentional community, and working in corporate settings.

The main segment features a conversation with Bevin and David, who formed a COVID-19 support group, or pod, with other families to help one another during the pandemic. They discuss:

They spontaneously decided to form the pod in May 2020

Creating formal rules and a written agreement to manage risks and expectations

The challenges of prioritizing the pod over extended family relationships

The practical arrangements include shared meals, childcare, and rotating responsibilities

Their collective approach to virtual schooling for their children

The difficulties David experienced as a teacher during hybrid learning

How their children viewed the pod experience as "the best time of their lives" despite adults' pandemic anxiety

The lasting bonds their "family of friends" developed and maintained

The pod used tools from Bevin's work in person-centered practices to create its governance structure. They made decisions based on consensus, with particular attention to accommodate the most cautious member's concerns. Their experience strengthened existing friendships and created lasting bonds between the families.

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

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

You know who you are. I'm grateful.

Podcast episode on YouTube

Inspired by and Grateful to

Jan Oldenburg, Nakela Cook, Russ Howerton

Links and references

World Health Network

National Center on Advancing Person-Centered Practices and Systems

Episode

Proem

My advocacy revolves around participatory governance in everything that contributes to a decent quality of life. Participatory governance entails broad involvement, accessible information, transparency, and accountability, leading to trust in decision-making. I’m a lifelong student of governance, having studied it in families, communities, teams, organizations, healthcare, research, and various other settings.

Podcast intro

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

My Life with Participatory Governance

I’ve watched and participated in governance since 1968, when I was 16, dealing with the Vietnam War draft. I learned that the plumbing of the draft contained laws, written regulations, and unwritten rules, with people making decisions, people moving paper, and massive numbers of kids like me processing through. I wanted to prepare myself, so I went to a church for draft counseling. My counselor invited me to become a counselor, helping men learn the process, make life decisions, and execute those decisions.

I went to college and lived in several group settings. We had to decide how the chores would get done, meals made, bills paid, and transportation arranged. While protesting the Vietnam War, I learned how activists organized rallies, and how the University was run. I gained insights from my professor friends about how change happens. While raising kids and homeschooling, my wife and I experimented with participatory democracy. The same issues arose: chores, money, and who sits where. After that, we lived in an intentional community with four other families on 160 acres. We needed an infrastructure for effective decision-making. We formed a corporation to own the land, created bylaws and a Board of Directors, and established rules for joining and leaving, paying taxes and bills, and behavior guidelines. As a corporate change agent, I was fascinated by governance, managing clinical and IT teams, and participating in mergers. Since then, I have served on several Boards and chaired one. The most impressive governance I’ve seen in sixty years is the World Health Network, PCORI, and the COVID pod created by several family friends.

Forming a Pod

I spoke with Bevin Croft and David Weintraub, who represent four couples with pre-and primary school children, forming a pod to manage their children's education and lives together while remaining safe. I’ve known Bevin since 2007. We became fast friends; I officiated at her wedding.

Health Hats: When did you give what you were doing a name?

Bevin: We used the name ‘pod’ because that was already like in the consciousness, like on the internet, as people were doing. They were creating pods.

Health Hats: When was the first time you did that? About yourselves?

Bevin: Yeah, we broke the seal. We had been discussing it, and we were all hanging out outside with the kids, which we had been doing regularly. And it was in May, although I don't remember the exact day. And we were just like. Fuck it.

David: Yeah. We're like, ' This is stupid. ‘ We're gonna do it. This is dumb. Like, why don't we just hang out?

Bevin: We just started hanging out, and we never stopped,

David: But there were some slight complications because the Owens moved to Hawaii. I think they moved in mid-April. I think they moved on April 15th or something. And they went for six months, from April 15th to October 15th.

Bevin: It was our very close, tight-knit group of 19 people, five families. Four of the five families decided to do this.

David: Three. No, the Chulas were not part of it.

Bevin: The Owens were before they moved to, that's right. Yeah. So, when we were like, screw it, we wanna hang out. It was these four families. The fifth family had another family with whom they had already podded; they also podded with another family with whom they shared some childcare arrangements. Yeah. Bennie and Allie. So they didn't pod with us. So, it was the four. Anyway. Yeah. It was at least these three families. And then a couple of other close families came and went.

Rules

We just started hanging out together. And it became evident very quickly that we also had to establish some rules because, back then, it was as if you were hanging out with us and your parents. Then what if we get each other sick, and then we bring it to, yeah, a parent, and then that parent gets sick and dies, and then we live with the guilt that we were messy? Those were the kinds of stakes and conversations we had to have. So, effectively, we didn't spend time with our parents.

David: Correct.

Bevin: And hung out with each other. One of the calculations was that for day-to-day sanity and closeness, and this is true. In general, I think your friends are the most important for people.  Not for everybody, but for us. And for a lot of people in our stage of life. Yeah. Having close friends who, with other kids the same age as your kids, was more essential. Yeah. To us socially.

Not easy

David: It was also hard. It was hard for me because my sister lives in Arlington and has two boys. She was upset that we couldn't see them outside very often. We would go bike riding in a parking lot just to see each other. But we couldn't hug or be in close contact, we couldn't be indoors, and that wore on them, and it wore on us a lot. But Bevin is right. We chose that because Jasper and Ivy live five doors down, right? And it just made more sense to have a close, literal, and emotional connection as the main connection at that point. However, it was challenging, as I had numerous tense conversations and non-conversations with my family members about that. Nothing was ever said that was mean or vindictive, but I think everybody felt the tension. Like I felt it, Jessie felt it, my sister felt it, her kids felt it, our kids felt it. So that was really hard. But at the same time, I think that having that pod was really necessary at that point.

Priorities

Health Hats: You just mentioned a specific challenge with it. What was challenging for you?

Bevin: About our arrangements? I loved it. I didn't have anything. It was clear to us that we wanted to spend time with these people, which was our priority. Everything else about the pandemic was challenging, but the actual pod arrangements themselves were the greatest challenge, as they involved negotiating everyone's needs.

Health Hats: Needs meaning alone time? Quibbles?

Rules, Contract, Risks

Bevin: No. It was the rules. It was knowing the rules.

David: You should tell about the contract.

Bevin: Yeah. So, it became clear quickly that there was no way we could. You know that. I don't know the details, but I'm sure it was for families now.

Health Hats: And you couldn't wing it.

Bevin: We couldn't wing it. Yeah. We couldn't just say, ' Oh, we'll find out.‘ It was like, no, it felt like life or death, right? No. We cannot infect the grandparents. No, you can't just hang out with this other family on the weekend. The stakes back then, before vaccines, when we didn't know the extent, were that somebody could get sick and die. So, the stakes were very high. We all had to be on the same page about our commitment to this like-pod arrangement.

Tools for Agreement

So,...

Who needs Spanish when you've got a saxophone? A music-lover proves that disability access is just another improvisation in Havana's jazz scene.

Best viewed as a video

https://youtu.be/Qz9Rm89LHD0

Summary

Danny, Health Hats, chronicles his week-long trip to Cuba in January for a music-cultural exchange. Using a wheelchair and playing baritone saxophone, he traveled with a group of 11 from the States, organized by Dan Fox and Arlington MA's Morningside Studios.

The group participated in a "Band Camp" hosted by the Havana Music School, receiving daily individual lessons, rehearsing in ensembles, and performing Cuban music at a restaurant. Despite Danny's initial anxieties about traveling with his disability and instrument, he found Cubans accommodating and helpful.

The podcast features an interview with Claudia Fumero, manager of the Havana Music School, who discusses:

The school's focus on teaching Cuban music to foreign visitors

How the business began and evolved from connecting students with teachers in their homes to having a dedicated facility

Her dream of expanding with more instruments and creating a small café where people can play music

The episode is interspersed with musical performances by the ensembles, including renditions of "Sofrito" and "Afro Blue" by Mongo Santamaria. The group also attended the Havana Jazz Festival each night during their stay.

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

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

You know who you are. I'm thankful.

Inspired by and Grateful to

Dan, Peter, Ann, Sonja, Jeff, Deb, Bob, Richard, Pachy, Claudia, Gisselle, Miguel, Alejandro, Mauri, Leo, Adrian, Angelito, Lazaro

Links and references

Morningside Studios

Morningside Studio Tours

Havana Music School on Instagram

The Second Ensemble performance featuring Jeff Stout, Deb Larkin, Bob Salitsky, and Dan Fox

Havana Jazz Festival 2025

Sofrito by Mongo Santamaria

Mambo Inn by Mario Bauza

Afro Blue by Mongo Santamaria

Lagrimas Negras by Miguel Matamoros

Guantanamera by Jose Marti/JoesitoFernandez

Proem

Music is a world within itself, with a language we all understand. — Stevie Wonder.

My nighttime voices bombarded me. How can you go to Cuba as a musician? You’re not good enough. Your wheelchair won’t make it over their crumbling roads and sidewalks.  Your horn is too big and heavy with everything else. You can’t do too many stairs. You don’t speak Spanish. You won’t be safe. I hate those deflating voices.

I should be excited about this chance of a lifetime. I completely trust Dan Fox, our guide and arranger. My disabilities do not define me. Helpful people are everywhere. I’m going with my partner of fifty years. We love music and culture. Who cares about politics?

What the heck? We went. Welcome to the story of our adventures.

Podcast intro

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

Blending Language and Culture

Music alone can abolish differences of language or culture between two people and invoke something indestructible within them. — Irene Nemirovsky.

Eleven of us from New England and Houston traveled to Cuba for a week in January for a music-cultural event—a Band Camp organized by Dan Fox and Arlington, MA’s Morningside Studios. Our group ranged from no Spanish (me) to fairly fluent (Sonya and Dan). Our host, the Havana Music School, was also fluent in English along this same continuum. Consequently, we communicated in three languages: Spanish, English, and Music. Few people were fluent in all three. My teacher, Pachy, and I managed well with some help from translation, pantomimes, and trial and error. We enjoyed exchanging knowledge, with me teaching him about’ herding cats’ and ‘God willing and the creek don’t rise.’ However, we had difficulty when he spoke about ‘black notes.’ I thought all notes were black, and he meant that quarter notes were the black ones.

The Morningside Music Studios group traveled to Cuba for a week of music. Hosted by the Havana Music School, we enjoyed two hours of individual lessons daily, followed by two hours of rehearsals with students and teachers in two ensembles working on five tunes. We did some sightseeing in the afternoons and attended one venue of the Havana Jazz Festival each night. The week culminated in the ensembles’ performances at a local restaurant. Since the Havana Jazz Festival had concluded, many local musicians attended our performance, cheering us on and joining in to sing.

This episode is an unpolished mix of photos, videos, and social media posts about our music, sightseeing, Airbnb, and the Havana Jazz Festival. I suggest watching the YouTube video for the best experience.

We’ll begin with an Instagram post about our luxurious accommodations in Havana, close to the Music School. The music background is Mambo Inn by Mario Bouza. Link in the show notes. https://www.instagram.com/p/DGY2KtJRCNZ/

We’ll follow that with the ensemble’s performance of Sofrito by Mongo Santamaria, then a conversation with Claudia Fumero and my wife, Ann Boland. https://youtu.be/yCXa7IGtBIw  

Havana Music School

Claudia Fumero and her husband, Miguel, own and operate the Havana Music School. We recorded the audio of our conversation about the school. My wife, Ann Boland, assisted with some translation. This episode's video includes photos and clips of our fellow students and teachers, along with a tour of the old city. https://health-hats.com/pod233.

Health Hats: So Claudia and Ann, thank you for being here with us. Claudia, introduce yourself and tell us where we are.

Claudia Fumero: My name is Claudia Fumero. I come from Cuba, and I have a music school—the music school shares Cuban music and Cuban culture for foreigners.

Ann Boland: Sharing the culture that was part of music for foreigners. Plus, she probably figured Americans would listen to this, which would be good for their school.

Health Hats: Okay. So is the school for foreigners only?

Claudia Fumero: Yeah. Now at this moment, it's for foreigners.

Health Hats: Yes. And foreigners who are not Cuban can be anywhere.

Claudia Fumero: Yes. Yeah.

Havana Music School – Morningside Studios Connection

Health Hats: So we're here with a group with Dan Fox that has had a relationship with you guys for some time. And how long has that been?

Claudia Fumero: I think it's mostly four or five years now. Yeah. Yeah. Because yeah, he wrote us our, because we are the website. Then he writes us.

Health Hats: Oh, the school is HavanaMusicSchool.com. Yes. Okay. So anybody can see it? Yes. I understand you have an Instagram page, too.

Claudia Fumero: Yes. The same, @HavanaMusicSchool.

Health Hats: We'll have to check that out. Yeah.

Managing the Business

What's your role? What's your job?

Claudia Fumero: Now, in this moment? I'm the manager. Yeah. Okay. And I'm teaching salsas, too. Now I respond to every email, uh, yeah. I call, uh, the teacher. Yeah, yeah. Arrange the lessons. Yeah. Okay. For the student. Sometimes, they came for two hours, one hour, or for more time. Maybe one week, one month. It depends on the students, but now I think the people came more for a short time. Maybe two hours, one hour. Yeah. It's the now in this time.

Ann Boland: Yeah. Just trying to try it out. Maybe just,

Claudia Fumero: I don't know, maybe the travel is changing. The world is changing. People don't have a lot of money and spend a lot of money. I don't know, maybe it's a big...

Health Hats: It's a big deal being a businessperson. The business is you and your husband. And so, um, how did you decide you wanted to do something like this?

Claudia Fumero: Yeah. First, uh, the idea for the school was my husband, Miguel, yeah. He went to, we met, and he wanted to stay in Cuba, and he thought, I need to do something to stay in Cuba with you and create the school. In the beginning, the teacher, the student going to

Ann Boland: Oh, they went to the teacher's house.

Claudia Fumero: The teacher's house. The first and after, we create the space with the instrument for the teacher and the students.

Health Hats: The germ of the idea, the beginning, was being the connector. Yeah. Between students and teachers.

Claudia Fumero: Exactly. Connect

Health Hats: the student with the teachers. Okay. And at first, they went to people's homes. Yes. Teachers' homes. Yes. And then I can see that, especially if the group gets large. Mm-hmm. Or your, yeah. It's much nicer to have a place.

Claudia Fumero: Exactly. So

Health Hats: Then, was this the first place?

Claudia Fumero: We start in another area of Havana but in a small house with two rooms. But it was very nice because, at the beginning, Obama came to Cuba, the country was opening, and many people came. Cuba was interesting in the experience, uh, for. Was amazing.

Managing the Stay

Health Hats: Okay. And then it got big, and it felt like you were successful. Yeah. And the price of success.

Yeah. I did. Being of a bigger play, I think, I know for me, I play bari sax, and I was like, oh, I'm bringing my chair and all my equipment. Anyway, you guys found one for me to rent. Mm-hmm. Yeah. And so, is that a usual thing when you find instruments? Yeah. For people who are traveling to play while they're here?

Claudia Fumero: The same instrument is difficult to fi

Data scientist Emily Hadley on navigating AI in healthcare, offering practical advice for maintaining patient agency amid algorithmic decision-making.

Summary

This interview with data scientist Emily Hadley examines the intersection of artificial intelligence and healthcare through a deeply personal lens. Hadley's journey began when her own health diagnosis coincided with her graduate studies in analytics, revealing how algorithm-driven systems often affect patient care—especially through insurance claim denials and clinical documentation. The conversation offers practical guidance for patients navigating AI-influenced healthcare, including reviewing AI-generated clinical notes for accuracy, challenging algorithmic insurance decisions, and insisting on human intervention when automated systems fail. Hadley advocates for preserving patient agency and rights within increasingly automated systems while highlighting how algorithm review boards are striving to provide governance in this largely unregulated space. The interview concludes with resources for staying informed about developments in healthcare AI, emphasizing that while AI tools are rapidly advancing, patient advocacy remains vital.

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

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, TikTok to @healthhats

Production Team

You know who you are. I'm grateful.

Podcast episode on YouTube

No video

Inspired by and Grateful to

Eric Pinaud, Laura Marcia, Amy Price, Dave deBronkart,

Links and references

Prompt Engineering

Algorithm Review Boards at RTI

Dave deBronkart's Patient's Use AI

Episode

Proem

This year, I switched from Medicare Advantage to Traditional Medicare. I still needed to purchase a supplemental commercial plan to cover what Medicare Part B didn’t. However, the supplemental commercial plan denied some services the previous Medicare Advantage plan covered. Why? What algorithms did each plan use to determine coverage? How can I manage this?

Welcome to the third installment of Artificial Intelligence Can Work for You. We’ve explored how I use AI in my podcast productions and delved into some AI basics with Info-Tech leader Eric Pinaud.

I asked Emily Hadley, a data scientist at RTI specializing in AI algorithms for insurance coverage decisions, to join us. Early in her graduate studies, Emily was diagnosed with Crohn’s disease. This led to her interest in studying insurance algorithms.

A Data Scientist Awakes

Health Hats: How did you gain expertise in AI?

Emily Hadley: Great question. I was diagnosed right as I started a graduate program in analytics. In my undergraduate studies, I studied statistics in public policy. I liked the idea of using data to shape how policymakers make decisions, especially in the US. I had done some work with AmeriCorps and then went to grad school to really hone those skills. Being diagnosed at the same time that I was in grad school meant that I was navigating to new, informative, and educational areas. And I think that that's when I really came to realize the power of data and the power of AI in shaping the way that organizations and people make decisions. We live in a really algorithm-fueled society. We constantly encounter technology and AI systems, even when we don't realize it.

An example I give is that I've faced many problems getting insurance to cover the things it is supposed to. I didn't realize until a couple of years ago that this is due to many insurers embracing algorithm-driven decision-making systems that often automatically deny coverage for services that should be included. Instead, they might say they don't cover it because the appropriate code was not included when billing. So, the provider claims, ' Oh, we don't cover that because the code was missing, ' even though it should have been included. I feel as though I've been a victim of some of these automated systems, which have significantly impacted my life and pushed me to understand that these AI systems are not hypothetical. We live with them every day, and we don't have a lot of insight into them as consumers or citizens. And that really pushed me into this responsible AI space of thinking. How do we develop and use algorithms that align with how people would treat each other? Not necessarily how algorithms and robots would treat each other.

Health Hats: Are you saying that this is a way to be more transparent about what's in the algorithms?

Emily Hadley: That's a piece of it.

Building Guardrails with AI Governance

Health Hats: In something you sent me to educate me more about what you're doing, you talked about algorithm review boards, and I was trying to picture them. Who's around the table? Can you tell us a little bit about what an algorithm is? Is it real? Is it theoretical?

Emily Hadley: Yeah, I'll launch right into it. I've been passionate and interested in this since I saw more companies embrace AI, especially in the United States. States don't have laws to guide how companies, academic institutions, nonprofits, and government organizations use AI. Certainly, some legislation and rulemaking is probably coming, but in the absence of it.

Organizations need to decide how they will manage AI from a risk perspective. This includes reputational risks to the organization, its customers, and the population at large. Also, from an equity and justice perspective, how can AI systems align with our organization's mission and values?

One of the things that I started noticing at my own organization was that we have something called the Data Governance Committee, which existed before ChatGPT became a big thing and before everyone talked about AI. The data governance committee was focused on how to protect data on the projects that we work on. Many projects involve private health information or other personally identifiable information. We need to ensure that even before GPT, we didn't want to upload this information to the cloud or expose people's data in a way that was not permitted.

This group has also adapted to become an AI review group. So, when someone at our organization wants to use AI in their projects, I recently wanted to use AI to help summarize some text responses that we were working on. Before I moved forward, I needed to check with the data governance committee to ensure that it aligned with RTI policies and that I was using the data in a protected and secure way.

I assumed, and this research confirmed, that other organizations are doing the same thing. They are putting together groups of people, especially in the finance and health sectors. To your point, they don't all look the same. Every organization is doing what works for them.

At my organization, the data governance committee includes our corporate council staff members, ethics officer, data privacy officer, and a couple of subject matter experts like myself, who bring a lot of different data or research pieces to the table. Finance organizations, especially banks, have had a long history of risk assessment committees for various credit scoring or lending algorithms.

They're mostly adapting a group, sometimes adding some new AI expertise, but a lot of that expertise is already in-house. I would say the health groups have done some of the most interesting and innovative work in this space because this type of review is new for many of them. It's similar to some FDA-type review work they've done.

Health Hats: Or IRB review.

Hallucinations and Validation with AI in Research

Emily Hadley: Exactly. As part of this research, we investigated whether IRBs could do this work. And what we heard was actually a resounding no, they did not consider.

Health Hats: it's a different focus. I've been on an IRB, and there is this business of being a generalist, so there's value in having a generalist or two generalists in a group of many experts. Okay. So, what do you think the role of consumers is on review boards and algorithm review boards?

Emily Hadley: I'm noticing a focus on affected communities, especially in the health sector. This includes patients and clinicians, particularly those engaged in the work. It's not an algorithm review board but for the long COVID research you mentioned. We have patient representatives involved in all of our manuscripts. I was just at a clinician review meeting last Friday, and it’s incredibly helpful to have someone provide insight when determining whether we prepared this methodology correctly. Are these initial results what you expected? Do you feel you have a say in this process and how it's being developed? I've also observed tech companies embrace that level of stakeholder involvement. It's more consumer driven. They want to create products that people will use. However, I am encouraged to see the participation of affected communities because I believe that's where many revelations occur.

Health Hats: Let's take a step back. What kinds of AI are used in research?

Emily Hadley: Yeah, that's a great question. In research, we see it using a couple of different areas. One of the biggest is information gathering, extraction, and summarization. We've been using it for literature reviews to help summarize or get key points out of particular papers. We've been excited that it allows people with different educational or literacy backgrounds to interpret papers. It can be really frustrating to work with a peer-reviewed publication where you're like, I don't know what it means here. So, some of the generative AI summarizations have been helpful. Another area we've seen some work in is when I mentioned this free text response.

I am coming up on a project right now where we've got some Reddit