Careful what you wish for. Health equity and participatory medicine depend on the widespread meaningful use of patient family advisors. The trickle of such advisors should be a stream. Unfortunately, even if the supply could meet demand, health care administrators, researchers, entrepreneurs lack skill in making good use of patient family advisors. Libby Hoy leads Patient Family-Centered Care Partners, a small organization with a large vision for improving the quality, safety, and experience of healthcare through the development of authentic partnerships from the bedside caregiving relationship to the boardroom.

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Episode Notes
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Contents with Time-Stamped Headings
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Introducing Libby Hoy and PFCC Partners 00:56. 1

Patient advocate. Patient family advisor. They differ. 04:30. 2

From Failure University to PFCC Partners 07:12. 2

Recognizing success 08:43. 3

Member / patient advisory panels 10:08. 3

Building capacity for patient family advisors 12:19. 3

Listen. What have you already done? 15:05. 4

Becoming CEO of your health 18:38. 4

Kids managing and deciding 21:32. 5

Engagement without policy. Ineffective. 24:40. 5

Preserve natural development. Pediatric and geriatric. 30:29. 7

The teachable spirit 36:11. 8

Reflections 38:41  8

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Credits
Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer

Sponsored by Abridge

Thanks to these fine folks who inspired me for this episode: Alexis Snyder, Carmin Quirion Wyman, Charlene Setlow, Chris Gordon, Harvey Hellerstein, Janice Tufte, Joan Maxwell, Katie Cascamo, Libby Hoy, Michael Mittelman, Michelle Blanchard, Sarah Cloud, Sarah Glover
Links
Patient Family-Centered Care Partners
Mitochondrial Disease
Stage Three Salivary Gland Cancer
PFA Network
abridge.com
Society for Participatory Medicine
National Institute on Aging
Five Wishes

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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. I'm the Rosetta Stone of Healthcare. 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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