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Patient stories Archives - SPM Blog
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Shared Decision-making: Becoming a Better Advocate for your Healthcare

Shared Decision-making: Becoming a Better Advocate for your Healthcare


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I have a confession to make: I’m not always an effective advocate for my own care. It’s probably helpful for me to put this into context. I have been working in and around healthcare organizations for more than 25 years. I’m a researcher by trade, and worked with...
What My Second Lease on Life Taught Me about the Power of Human Connection

What My Second Lease on Life Taught Me about the Power of Human Connection


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I was born with a congenital heart defect called bicuspid aortic stenosis with regurgitation. When I was 12 years old I was told I needed immediate open-heart surgery. As the anxiety, depression and sheer terror set in, my family tried to distract me by taking me on...
Through the Maze: A New Model for Equitable Health Data Exchange

Through the Maze: A New Model for Equitable Health Data Exchange


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My brother Jacob was born with a chronic neurological condition that caused him permanent physical and mental disabilities. As the only other child in a single parent family, I was often with Jacob during his frequent hospital stays and doctor visits. It is through...
Glimmers of Hope: Real Progress In Participatory Medicine

Glimmers of Hope: Real Progress In Participatory Medicine


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Twenty-five years ago, I learned I had a large liposarcoma in my left quadricep. I have written elsewhere about my surprise when my surgeon informed me that he and the team had changed the treatment plan. What team? Who are these people? Why wasn’t I at the team...

AI Gives SPM a New Opportunity to Lead


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I recently posted an article entitled, “In Cancer, Patient-Empowering AI Begins to Change Care, Relationships,” that contained this declaration, “Good medicine needs to become participatory medicine, not least because involving the patient as a partner consistently...
A Citizen’s Response Corps for Digital Health

A Citizen’s Response Corps for Digital Health


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Editor’s note: In his new book, The Long Haul – Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever, journalist and patient Ryan Prior depicts the courage of patients with Long COVID who were the first to name,...

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