Tag Archives: MS

Patient Empowerment

Danny van Leeuwen Prepares for Another Journey

Editor’s Pre-note: I occasionally look back at posts we published 1 year ago, 2 years ago and so on, as a way to mark and often marvel at the passage of time. Finding that I posted Danny van Leeuwen’s thoughts about his health journey (below) one year ago struck a chord because I recently enjoyed […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 182 post(s) at EngagingPatients.org

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Patient Empowerment

My Journey Toward Best Health

Editor’s Note: In this episode of his podcast, Danny van Leeuwen interviews himself in the guise of “Health Hats,” the moniker Danny has used for many years. Danny is always inspiring, whether interviewing others for the podcast or engaging himself in sincere reflection about what’s most important now. This episode reads like an update to […]

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Danny van Leeuwen Danny van Leeuwen, an action catalyst empowering people traveling together toward best health, wears many hats in healthcare: patient with MS, care partner for several family members’ end-of-life journeys, a nurse for 40 years, an informaticist and a QI leader. Danny focuses on learning what works for people: patient-centered research, communication at transitions of care, health planning, informed decision-making and technology supporting solutions created by and for people. He reviews PCORI research funding applications and serves as co-chair of PCORI’s Communication and Dissemination Advisory Panel. Danny also serves on a technical panel advising CMS on quality-measure development and is active in the Society for Participatory Medicine. Danny blogs weekly (www.health-hats.com) and was recently published in BMJ.

Danny van Leeuwen, Opa, RN, MPH, CPHQ has 4 post(s) at EngagingPatients.org

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Personal Health Journey

Engaged in My Health Journey – An Experiment of One

Editor’s Note: On his personal blog, Health Hats, Danny van Leeuwen reports on the 10th annual Healthcare Literacy in Research Conference, held in Washington, D.C., October 21–23. Danny attended as a PCORI Ambassador. Although he didn’t find exactly what he went looking for — “co-produced research (researcher and patient partners) about lay people, professionals, and communities understanding each other to […]

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Danny van Leeuwen Danny van Leeuwen, an action catalyst empowering people traveling together toward best health, wears many hats in healthcare: patient with MS, care partner for several family members’ end-of-life journeys, a nurse for 40 years, an informaticist and a QI leader. Danny focuses on learning what works for people: patient-centered research, communication at transitions of care, health planning, informed decision-making and technology supporting solutions created by and for people. He reviews PCORI research funding applications and serves as co-chair of PCORI’s Communication and Dissemination Advisory Panel. Danny also serves on a technical panel advising CMS on quality-measure development and is active in the Society for Participatory Medicine. Danny blogs weekly (www.health-hats.com) and was recently published in BMJ.

Danny van Leeuwen, Opa, RN, MPH, CPHQ has 4 post(s) at EngagingPatients.org

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Encore Presentation

Engaged in My Health Journey – An Experiment of One

Editor’s Note: Danny van Leeuwen is a remarkably prolific blogger, and I look forward to reading all his posts. In a recent post, he expressed frustration with medication lists that defy correction and constantly default to old or incorrect information despite his attempts and the sincere efforts of his providers to make them right. My […]

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Danny van Leeuwen Danny van Leeuwen, an action catalyst empowering people traveling together toward best health, wears many hats in healthcare: patient with MS, care partner for several family members’ end-of-life journeys, a nurse for 40 years, an informaticist and a QI leader. Danny focuses on learning what works for people: patient-centered research, communication at transitions of care, health planning, informed decision-making and technology supporting solutions created by and for people. He reviews PCORI research funding applications and serves as co-chair of PCORI’s Communication and Dissemination Advisory Panel. Danny also serves on a technical panel advising CMS on quality-measure development and is active in the Society for Participatory Medicine. Danny blogs weekly (www.health-hats.com) and was recently published in BMJ.

Danny van Leeuwen, Opa, RN, MPH, CPHQ has 4 post(s) at EngagingPatients.org

Check out my: Twitter


My Health Journey

Engaged in My Health Journey—An Experiment of One

When I travel on my health journey, I like it best when I have a destination, companions, and a map. I value the experience as often as I can, learn from it, and adjust when I don’t get where I want to go at a satisfactory speed. So, destination = personal health goals. Companions=health team. […]

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Danny van Leeuwen Danny van Leeuwen, an action catalyst empowering people traveling together toward best health, wears many hats in healthcare: patient with MS, care partner for several family members’ end-of-life journeys, a nurse for 40 years, an informaticist and a QI leader. Danny focuses on learning what works for people: patient-centered research, communication at transitions of care, health planning, informed decision-making and technology supporting solutions created by and for people. He reviews PCORI research funding applications and serves as co-chair of PCORI’s Communication and Dissemination Advisory Panel. Danny also serves on a technical panel advising CMS on quality-measure development and is active in the Society for Participatory Medicine. Danny blogs weekly (www.health-hats.com) and was recently published in BMJ.

Danny van Leeuwen, Opa, RN, MPH, CPHQ has 4 post(s) at EngagingPatients.org

Check out my: Twitter