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Patients and Industry: Starting Our New Life Together in 2023

Patients and Industry: Starting Our New Life Together in 2023

Flash back to my article for the Society for Participatory Medicine last year: Let’s Save the Date and Make Patient Engagement Official in 2022. I’m here to deliver some great news: we tied the knot! By the power vested in clinical research, the FDA now pronounces us...
Health Literacy Requires Talking with People – Not Patients

Health Literacy Requires Talking with People – Not Patients

“When someone is having an acute situation, that is not a teaching moment.” Peter Pitts  I recently participated on a panel at the STAT Summit with two brilliant healthcare thought leaders, former FDA Associate Commissioner and current president of the Center for...
Storytelling: Where Compassion is Born

Storytelling: Where Compassion is Born

Editor’s note: In this excerpt from her latest book, Ducks in a Row, Canadian-based author, Sue Robins explains the power of storytelling for everybody invested in health care—patients and clinicians alike.  A well-told story, Robins explains, has the ability to...
Participatory Medicine is Where You Find It

Participatory Medicine is Where You Find It

Collaborations across healthcare can save lives – especially when working with patient advocates. For a person like me, who is impacted by a rare, neurological, and incurable disease, it’s my mission to ensure that patients’ perspectives are represented  early...
Turning Pain into Power through Advocacy

Turning Pain into Power through Advocacy

When I heard the words, “You have Lupus,” I didn’t know the magnitude of how much my life was going to be tested. It started in 1980 when rashes and unexplained fevers plagued my life. Seeing doctors about my symptoms led to solutions that were only temporary. Fifteen...

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