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Apples-to-Apples? Person-First Engagement & Power Shifting.

By May 2, 2021February 21st, 2022Advocate, Caregiver, ePatient, Podcasts, Researcher

The powerful are not homogenous. The person-first approach (meet people where they are) can help us better strategize and advocate for partnership and shared decision-making in health choices, research, practice, policy, or equity.

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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

The power of person-first 02:13. 1

The powerful are not homogenous 03:30. 1

Who are we advocates and activists? 06:28. 2

Reflection 07:23. 2

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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

Inspiration from Greg Merritt, Neely Williams, Nadine Zemon, Karen Fortuna, Fred Gutierrez, Harvey Hellerstein, James Harrison, Brendaly Rodriguez, Russell Bennett, Amy Price

Photo by Natasha Arefyeva on Unsplash


Fred Gutierrez’ Homeowners Institute podcast

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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


Greetings, readers and listeners. Have I expressed my gratitude out loud to you recently? I’m grateful for your participation in my musings and curiosity while learning on the journey toward best health. I’m grateful to my guests who allow us some moments of intimacy with them to peek into their passion and expertise. I love that I can roam where the spirit moves me, and you still return. Thank you. From my heart, thank you. Each interview episode takes from 12-20 hours to produce – a labor of love. Recently, I’ve alternated interview episodes with much shorter on-mic episodes – on mic means just me.  These take six to ten hours to produce and leaves me more time to play music. I’m continually surprised as people reach out to share a connection they felt during an interview or on mic episode. Maybe not surprised as much as fueled. Fuel for keeping on. Again, my gratitude.

The power of person-first

I’m a person who needs a vision – a picture of an ideal state – like best health.  Then I can head to that destination. You’ve heard me rant about goal setting – the destination for best health. You’ve heard me go on about changing the power dynamic in the relationship between patients and caregivers and their clinician partners; between patients and caregivers and researchers – and developers, administrators, policymakers. You’ve listened to my soapbox about person-first: start with the patient and caregiver, not with the institution, the expert, the powerful, not the privileged. I’ve explored with you that person-first – starting where we are – means creating personas to better get your brain around the tremendous diversity of people and communities.  Applying person-first to COVID-19 meant organizing people in our minds and ears into those with symptoms or not, living and working in dense settings or not, having a baseline of good health or multiple chronic conditions, etc.

The powerful are not homogenous

What about applying person-first to the moneyed, the influential, and expert relationships with patients and caregivers? How do we start with where they are? Suppose my vision, the ideal state I seek, is about more equal power dynamics in relationships. How can we better understand the diversity of people who are traditionally up in those relationships? Just like patients and caregivers, the more powerful are not homogenous.

Perhaps we can group the powerful into those that have already drunk the Kool-Aid of engagement, partnering, sharing in decision-making and those who haven’t. Those who have existing power-equal relationships and those who don’t. Some with more power know they have a problem to solve that requires expertise they don’t yet have access to, and some don’t. Some have budgeted for engagement and partnership, and some haven’t. Some are prepared to change. Some aren’t. Some appreciate the expertise of life literacy and lived experience, and some don’t. Some are self-confident and not threatened by change. Some aren’t. Do you get the idea? A person with power may have self-confidence, comfort with change, a budget for mentoring and coaching, time and patience, and a well-defined problem that requires expertise their team lacks. In contrast, a person with power may feel threatened by change, have no budget, no time, and wants to check a box to demonstrate engagement or shared decision-making. The strategy and tactics for partnership would be radically different when advocating for partnership and shared decision-making, given where they sit on the continuum.

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Use Abridge during your telehealth visit with your primary care or family doc. Put the app next to your phone or computer, 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.

Who are we advocates and activists?

While we’re at it, we should apply person-first – start where people are – to ourselves as person advocates and community activists. The more powerful may benefit from understanding the variation in us. We have varied comfort and understanding of our lived experience, varied communication skills, varied knowledge of medical terms and systems. Some are more networked than others, have more time to devote to advocacy, more desire.  Some have transportation to events or high-speed internet access, some have dependent care responsibilities, and some don’t. Some have hutzpah, self-confidence, curiosity, and some have less. Advocates and activists live along a continuum of comfort with and experience with critical thinking.


My singular point of this rant: for success as a change agent for policy, practice, research, equity, or decision-making, meet people where they are. There are no apples-to-apples comparisons. I try to start by listening and learning about and from potential partners and then adjust my strategy and tactics accordingly. And have some fun. I’m fair at it. How about you? This was a pretty short episode, no? Thanks to Fred Gutierrez of Homeowners Institute podcast fame for the apples-to-apples metaphor. Check him out in the show notes. Homeowner’s Institute explores the hidden side of teamwork in home building and renovation – not healthcare, but relevant and inspiring, nonetheless.

Danny van Leeuwen

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