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Innovation, Local Persistence #144

By October 3, 2021February 21st, 2022Advocate, Caregiver, Clinician, ePatient, Leader, Podcasts, Researcher
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Innovation is not like switching on a lightbulb for the world. Rather it’s local iterative, persistent steps. Thoughts from the Patient Experience Symposium.

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Episode Notes

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Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings

to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Oy, the noise in my head 02:09. 1

Let’s start positive. 03:14. 1

Research and innovation 06:18. 2

Prioritizing innovation – limits 08:32. 3

Innovations in engagement – innovators need innovative settings 09:04. 3

Reflection 09:50  3

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

Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger

Web and Social Media Coach Kayla Nelson @lifeoflesion

Photo by Ross Findon on Unsplash

Inspired by and grateful to Jan Oldenburg, Kristin Carman, Joanna Siegel, Juhan Sonin, Laura Marcial, James Harrison

Sponsored by Abridge

Support Health Hats, the Podcast financially


Patient Experience Symposium

COVID-19 Through the Eyes of an American Refugee: A Story of Engagement

Co-Designing Telehealth with Patients the Cambridge Health Alliance

the Society of Participatory Medicine

Hospitals Collaborate to Ensure COVID Care for Every Coloradan

Kaiser Permanente funds community health innovations

Patient-Centered Outcomes Research Institute, Request for Information: Science of Engagement Funding Initiative

Harlan Krumholz Keynote Patient-Powered Research

Related podcasts and blogs

Community Rocks

Cinderblocks4 – Medical Advocacy at its Best

About the Show

Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

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The Show


As I left the Patient Experience Symposium in Boston, (Yes, an in-person conference. How weird!) I felt schizophrenic. On the one hand, has the healthcare industry progressed at all hardwiring the improvement of patient experience? On the other, OMG, so much innovation! I listened to dedicated, diehard patient experience professionals teeming with frustration at the setbacks occurring during COVID-19 days. Families excluded from the bedside; people dying alone; active, engaged, mature patient-family infrastructure canceled, dying on the vine. I also sat rapt, hearing diverse community representatives inspired by collaborative local COVID-19 problem-solving. In this episode, I will muse about healthcare innvation, while trying to stay positive.

Thanks to the Society of Participatory Medicine for subsidizing my attendance at the conference and my team, Kayla Nelson and Joey van Leeuwen, helping me make these podcasts better than they would be.

Oy, the noise in my head

During the Patient Experience Symposium, the voices in my head cycled a cacophony of emotional questions. Isn’t innovation the human condition – always adapting, trying something new? Yet, we seem to live in a negative feedback loop – I can’t. I’m not good enough. I can’t. I’m not good enough. How does innovation occur in healthcare? Can institutions sustain innovation in the face of crises?  Wait, inspiring innovation occurs in communities seeking solutions to their local problems with community members leading. Inspiring! What can we learn from crisis-limited innovation in institutions and from innovation arising from necessity? Can we study or research innovation?  Can we measure it? Does research itself limit innovation, do institutions by their nature curb innovation?

Let’s start positive.

There’s enough discouragement. At the conference I listened to Ifrah Ahmed, a Children’s Mental Health Case Manager in the rural Kansas Somali community of Garden City, COVID-19 Through the Eyes of an American Refugee: A Story of Engagement. COVID-19 has shined a bright light on the widening disparities that exist between rural and urban America. These fractures were especially evident in areas such as southwest Kansas, one of the most remote and culturally diverse regions in the United States. The refugees from 30+ countries who worked at the world’s largest beef packing plant were unable to isolate themselves from others at work and home, making them some of the most vulnerable Americans during the spread of the pandemic. Hundreds of these essential workers were infected in the same apartment complex. I hope to bring Ifrah to you in a future episode.

Kirsten Meisinger, Regional Medical Director and Director, Provider Engagement, at the Cambridge Health Alliance, told the story of Co-Designing Telehealth with Patients. Telehealth has taken off because of the social distancing requirements during COVID, while simultaneously community and religious organizations also converted their interactions to virtual spaces. With the need to communicate regularly about public health information as well as how to access care, these two new virtual spaces have been learning how to interact and complement each other. The session outlined successful and unsuccessful interactions between the Cambridge Health Alliance and partner community organizations. Dr. Meisinger will join us here soon.

Dr. Darlene Tad-Y shared her experience with Hospitals Collaborate to Ensure COVID Care for Every Coloradan. During the COVID-19 surge in the winter of 2020 in Colorado, hospitals in the state voluntarily collaborated to create the Combined Hospital Transfer Center (CHTC). The CHTC allowed hospitals to seamlessly move patients from one hospital to another when acute and critical care capacity limits were reached in any one hospital or region. Transfers of patients occurred bidirectionally between urban and rural hospitals. 

Ok. Now the negative. Oh, forget it. Let’s skip the negative.  I up to the brim with negative.

Research and innovation

Research is made up of institutions and bureaucracies just like hospitals, health systems, and insurance companies. Bureaucracies and institutions favor safety, precedent, and inertia and protect against risk – risk as reputation or cost. Not a value judgment, it’s the nature of the beast. I’m most familiar with comparative effectiveness research or CER.  CER means A is more likely than B to work for this specific population under these specific circumstances. CER, comparative effectiveness research, needs the comparators, A and B, to have some evidence that they work.  Innovation, by its nature, might not have evidence yet – no research has yet been completed to show that it works. So, it’s hard to get funding to compare innovative interventions to current practice. You ask, what’s an intervention? An intervention might be a drug, a procedure, a teaching tool, a service, a means of access to services.  What kinds of services are we talking about – hospital, clinic, community, neighborhood social services? Got it?

Now a word from our sponsor, Abridge. Use Abridge during your visit with your primary care, specialist, or any clinician. Put the app on the table or desk, push the big pink button, and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at or download it on the Apple App Store or Google Play Store. Record your health care conversations.

Prioritizing innovation – limits

Some organizations prioritize innovation. For example, Kaiser Permanente funds community health innovations. Even these organizations struggle to scale innovations within their organization (think Kaiser’s Southern California, Northern California, Colorado, Hawaii, Mid-Atlantic regions). How hard it must be to generalize the innovation to other organizations?

Innovations in engagement – innovators need innovative settings

Researchers, clinician, and patient-caregiver leaders spend much effort advancing provider engagement with patients. Yet how can clinicians working in an unempowering setting and empower others?  If they can’t control the time they can spend with patients, how can they do the work of listening?  PCORI, the Patient Centered Outcomes Research Institute just sent an RFI, Request for Information: Science of Engagement Funding Initiative. If you’re a researcher or patient-caregiver working with researchers check it out. Potential for innovation!


So what? Where does this leave us? Some people regularly strive to adjust, to innovate. Some people hear a negative feedback loop of I can’t, I’m not good enough. More communities than we can possibly know, do the hard work of innovative problem solving led by members with passion and drive. Some organizations hardwire innovation yet struggle to generalize outside the innovation hub. Many institutions resist change and favor safety, precedent, and inertia. You’re never there with innovation. It’s not the end of the road. It’s always a next stop.

Perhaps the sweet spot combines all of this: in healthcare, hardwiring the engagement of users – patients, caregivers, and point-of-care clinicians at all levels of organizations and process. This engagement is similar to communities solving their own problems with community members leading. Engage users, stakeholders in governance, operations, learning, wherever. Another thought: Innovation is not like switching on a lightbulb – Eureka! I’ve got it. Rather innovation is iterative, persistent small steps, moderate steps – key word: persistent. That’s where people with chronic illness may have an advantage. They keep trying stuff, works or doesn’t, try again, go back to the beginning. Persist. These observations break no new ground, rather they are the foundation of success, performance improvement, user-centered design. Push on folks. We have work to do. Thanks for listening to my rant.

Danny van Leeuwen

Patient/Caregiver activist: learn on the journey toward best health

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