Society for Participatory Medicine
e-patients.net blog
e-patient stories
e-patient stories, patient networks, pts as teachers, social media
Helen Palmquist: Supporting my cyber-sisters with words of hope
Guest blogger Helen Palmquist is a member of the Ovarian Cancer National Alliance support community, hosted by Inspire. She lives in suburban Chicago. I was diagnosed with ovarian cancer at age 41, in the pre-Web days of 1987. From my hospital bed after my first surgery, I phoned two people whom I had heard were [...]
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Hugo Campos on NPR’s “On The Media”
Read to the end… Our man Hugo Campos (see Friday’s post) is becoming a media star! TEDx, then MIT Technology Review, now NPR’s ”On The Media”! From SPM co-founder Joe Graedon, of People’s Pharmacy, on the SPM listserv – see also the items below …
Read Moree-patient stories, medical records
Hugo Campos at TEDx Cambridge: “Gimme My Damn Data,” Defibrillator Edition
We often say here “Gimme my damn data,” referring to our sentiment that data about our health is our data, about us, created for our well-being. And as the saying goes, “Nothing about me without me.” And where, we might ask, is that more vital than in the heart? SPM member Hugo Campos (Twitter @HugoOC) [...]
Read Moree-patient stories, patient networks, Why I joined
Ileana Balcu: The marriage of HIT with quality, transparency and cooperation between patients and doctors
In the latest post in our Why I Joined SPM series, guest blogger Ileana Balcu shares her story of pain, searching, and finally healing, once she discovered the e-patient community. Follow her on Twitter at @yogileana. It was 2002 and I was happily pregnant. I thought I’d read all I could about pregnancy. But scary [...]
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Rookie e-patient @Xeni helps the docs view her data
Update 6:33pm ET: the Storify feed wasn’t working. Should be fixed now. What a rocket ride it’s been for Xeni. Tuesday morning we reported on the BoingBoing co-editor’s unexpected breast cancer diagnosis 12/9, and her odyssey reading her scan data. (CDs didn’t come with software; in a few hours with Twitter help she’d downloaded OsiriX [...]
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Gimme My Damn Data: cancer patient Xeni finds a “ghost penis” in her bone scan
This post contains street language about body parts, harvested from Twitter last night with Xeni’s permission. This is a story of a non-medical person getting it in gear when she finds herself in need, and what happens when she does. A famous blogger/journalist is discovering healthcare the hard way. At a time when she says [...]
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In memoriam: Monique Doyle Spencer
Cross-posted from my own site. Last night a dear and inspiring friend breathed her last. Monique Doyle Spencer, metastatic breast cancer patient, died at home as she wished. All knew the end was near. A couple of weeks ago she happily attended her daughter’s wedding; she had a good Thanksgiving, our mutual friend Paul Levy says, then [...]
Read Moree-patient stories, general
Worst Headache of My Life Becomes Lesson About Role of Story in Health
This post and 5 minute video were published on ABC News yesterday and I want to share them with this community as well. Three months ago, at the age of 40, I had a small bleed in my brain. My story is no more special than any of your stories, but I learned something important [...]
Read Moree-patient stories, others' e-patient stories, Why PM
Next “doctor as e-patient”: Howard Luks, MD
We’ve sometimes written about doctors as e-patients. (There are a lot!) Here’s the next. SPM member Howard Luks MD, orthopedist, had some symptoms. He spoke to his physician and GI doc, who gave him pills. It didn’t make sense to him. So he did what a lot of us do: “Then I headed onto a [...]
Read Moree-patient stories, general, hc's problem list, pts as teachers, reforming hc, Why PM
“When I became a patient, I felt my identity slipping away.”
Participatory medicine requires an empowered partnership, in which patients express their wants and pursue their goals in partnership with providers who hear them and work together. And that’s not just about the biology. In this powerful narrative, a hospital executive becomes a patient, sees what it’s like to be stripped of everything and not heard, [...]
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