Patient Involvement

January 15, 2019

Shifting the “Privacy Calculus” for the Patients Online

By Colleen Young, Connect Director colleenyoung

For many people, sharing about their health online overrides conventional concerns about privacy. Each person weighs the benefits and risks arriving at their own “privacy calculus”. Patients and caregivers who share about their health in online communities told me that they agree with Alan Westin’s concept of privacy: The right to privacy is the individual’s […]

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Tags: Online community, patient community, patient data, privacy, security


December 14, 2018

Message in a Bottle? What Lost Rubber Ducks in the Ocean Can Teach Us About Patient Care

By Farris Timimi MD, Medical Director, Mayo Clinic Social Media Network FarrisTimimi

The Experts by Experience series features columns—Knowledge Translation–by guest authors who underscore the need for building an engaging, collaborative health care culture. Knowledge Translation columnists include health care leaders, clinicians, researchers, and marketing and communication professionals who translate the importance of integrating first-hand experiences of patients and caregivers, in ways that are meaningful and relevant, to engage and expand the dialogue on patient experience. Over a quarter of a […]

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December 7, 2018

Surviving, Then Thriving – Experts by Experience

By Erin Moriarty Wade emoriartywade

On a cold dismal Wednesday afternoon, I found myself sitting at the children’s hospital for the third day that week. My two-year-old was throwing a huge fit because he wasn’t allowed into the therapy pool where my daughter was having a session with her physical therapist. My nine-year-old son was walking home alone from school, […]

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November 30, 2018

Narrative in Health Care: Curiosity, Context, Collaboration

By Pamela Ressler pamressler

The Experts by Experience series features columns—Knowledge Translation–by guest authors who underscore the need for building an engaging, collaborative health care culture. Knowledge Translation columnists include health care leaders, clinicians, researchers, and marketing and communication professionals who translate the importance of integrating first-hand experiences of patients and caregivers, in ways that are meaningful and relevant, to engage and expand the dialogue on patient experience. “We tell ourselves stories in […]

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Tags: #ExpertsbyExperience


November 16, 2018

The Art of Slowness: The Abstract and Concrete in Chronic Illness – Experts by Experience

By kozachek kozachek

The desire to have control over one’s environment, and to have access to the fruits of life and labor, burns consistently in every heart. In the face of health adversity, realistically evaluating your ability, and pacing accordingly, is my best approach to achieve success. But this can be a challenge within our cultural paradigm of […]

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Tags: Ehlers-Danlos Syndrome


November 2, 2018

Stories Matter: Why You Should Embed Patient Stories at the Heart of What You Do – Experts by Experience

By Marie Ennis-O'Connor MarieEnnisOConnor

From time to time, the Experts by Experience series features columns–Knowledge Translation–by guest authors who underscore the need for building an engaging, collaborative health care culture. Knowledge Translation columnists include health care leaders, clinicians, researchers, and marketing and communication professionals who translate the importance of integrating first-hand experiences of patients and caregivers, in ways that are meaningful and relevant, to engage and expand the dialogue on […]

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Tags: story telling


October 19, 2018

A Call to Courage – Experts by Experience

By laurakieger laurakieger

“Now is not the time to get scared.” Those are the words of Dr. Howard Kaufman, one of the scientists who approved a gene-editing human study conducted in California in late 2017. The patient, a man named Brian Madeux, suffers from a rare inherited metabolic disease, and this clinical study is the first attempt by […]

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