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PCORI | Danny van Leeuwen Health Hats

Family Practice – The Cornerstone of My Team

By Caregiver, ePatient, Clinician, Podcasts No Comments

I love my family doc. If you’re not happy with your primary care doc, find someone you trust to help you find another one. She’ll be your cornerstone. Interview with Dr. Laura Zucker.

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Trust: Willing to be Vulnerable. Worth the Investment.

By Researcher, ePatient, Clinician, Leader, Informaticist, Family man, Advocate, Podcasts One Comment

Best health builds on trust – trust in people, institutions, information, and solutions. I trust my primary care doc.  I trust my chiropractor. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. Trust doesn’t mean blind following. Rather trust leads to more control or feeling more in control. I need trust when I’m in a crisis and can’t think clearly. I listen to my immediate family and my two lead docs (in that order). I’m likely to do what they recommend. Trust is for when I need to decide but can’t or don’t want to. Trust is for times of uncertainty.

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Independent Community Benefit Practice

By Researcher, ePatient, Leader, Advocate, Podcasts No Comments

Michael Mittelman received three kidneys via transplant, his current kidney from a living donor, his mother. He identifies as an advocate for organ donation, specifically, living organ donors. He also works across disease areas to help companies understand and involve patients. He cares deeply about access and equity in healthcare. For this episode, I’m going to test calling our work as advocates, activists, and partners, an Independent Community Benefit Practice.

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More Patient Experts at the Table

By ePatient, Advocate, Podcasts No Comments

Patient expert, co-investigator, patient partner, subject matter expert, patient advocate, patient/caregiver activist. Many labels. Whatever you call us, invite those of us with different and unique experience, skills, and circumstances to sit at decision-making tables. Then treat us as equals and respect us. Then do something with what we offer.

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Lead by Example

By ePatient, Advocate, Podcasts No Comments

Wow, four strokes by age 39. Quite a record for a sportswoman. A story about trust. First, no benefit of the doubt by the first diagnosing person thinking that Lisa was a drugged-out college student. Then Lisa’s trust in herself as a patient expert. Experience and engagement reinforce each other and builds confidence. No mystery that I appreciate I’m “good at naps.” So far, I don’t know how else to introduce young people to choices about health, wellness, or illness other than including them when someone in their lives is actively making such choices. Lead by example. Also, no mystery that I appreciate Lisa’s emphasis on telling her story. I’m delighted to be a channel.

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Standing on the Shoulders of Giants

By ePatient, Advocate, Podcasts 2 Comments

Teresa Wright-Johnson is a giant of advocacy. We stand on her shoulders; she stands on ours. “You matter” coming from Teresa is powerful and uplifting.  Teresa is a Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. A retired Parole Officer, Teresa uses her life experiences to inspire and inform others. She’s careful, conscious, and confident. She sets an example and speaks for the unspoken.

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