Patient Involvement

August 2, 2019

When the Fearful become Fearless – Experts by Experience

By Carly Flumer carlyflumer

The drip-drip-dripping of the sink in the radiology room echoed loudly in my brain as I waited for the pathologist. I just had a biopsy done for two spots on my neck—one suspected to be cancerous. “A nodule,” my primary care physician had previously explained at my annual physical. The radiologist had comforted me, casually […]

View full entry

Tags: cancer, thyroid


May 3, 2019

Don’t Forget Us! Young Adults with Invisible Illness – Experts by Experience

By Sneha Dave ssdave

My brain swirled as I waited on the surgery table for my colectomy, the removal of the entire large intestine. I told the anesthesiologist I was ready for him to start the sedation, knowing this is an irreversible surgery, but also knowing I would come out with a new life. I was 13. I thought […]

View full entry


April 5, 2019

My Leaky Life: Learning to Live with Chronic CSF Leaks – Experts by Experience

By Rebecca Wallick wallickr

My dogs and I prepare to head out for a walk in the forest. They’re excited–which makes it challenging for me to put their visibility vests on them. My anger instantly swells out of proportion; I growl, move abruptly. The instant I’m short-tempered with them, I simultaneously recognize it and back down, asking myself, “Who […]

View full entry


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 […]

View full entry

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 […]

View full entry


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, […]

View full entry


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 […]

View full entry

Tags: #ExpertsbyExperience


© Mayo Clinic Social Media Network. All Rights Reserved.