by e-Patient Dave | Apr 16, 2012
One of the best-known sad stories in the e-patient movement is that of SPM member Regina Holliday, her husband Fred, and their two children. Fred died three years ago of kidney cancer in a series of failures of American healthcare, leaving a story that Regina now...
by e-Patient Dave | Mar 23, 2012
It’s terrific that so many members of the Society for Participatory Medicine are contributing guest posts that share their e-patient story or how they came to know and care about participatory medicine. This one, by Akiva Zablocki (@iPatchMan), is extraordinary,...
by Susannah Fox | Mar 18, 2012
The following was originally Katie McCurdy’s response to the excellent, ongoing discussion about the future for self-tracking. It’s too good not to elevate to a post of its own — Susannah....
by e-Patient Dave | Mar 16, 2012
Beyond question, the “gimme my damn data” rock star of 2012 is ICD patient Hugo Campos. (See our past posts about him, including his TEDx Cambridge talk and other media coverage.) I just learned about this well produced short version of his story and his...
by Susannah Fox | Mar 16, 2012
On February 29, 2012, Rare Disease Day, I hosted a conversation with Catherine Fairchild Calhoun and Laurie Strongin, two people who have inspired me in my research about the social impact of the internet on health. They have also inspired me personally, finding joy...
by e-Patient Dave | Mar 14, 2012
Twitter friend @Scanman submitted this one. Robert Krause was diagnosed with diabetes in 1926, at age 5, shortly after insulin was introduced. What a story of a patient who was engaged in his care – starting at age 6. He died this month, just before turning 91....
by Susannah Fox | Mar 13, 2012
Nell Minow is a movie critic and corporate governance watchdog (yep, both). She and I were seated together at a luncheon a few weeks ago, part of a weekend-long meeting on leadership. We had just watched the movie, Act of Valor, and began talking about different kinds...
by e-Patient Dave | Mar 1, 2012
This was originally posted on my own site. Social media response has said the examples of dialog help people envision how they can express things with their providers. There’s a new ending, at bottom. There’s nothing here that will be a surprise to any...
by Kathleen O'Malley | Feb 8, 2012
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...
by e-Patient Dave | Jan 22, 2012
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...
by e-Patient Dave | Jan 20, 2012
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...
by Kathleen O'Malley | Jan 9, 2012
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...
by e-Patient Dave | Dec 22, 2011
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....
by e-Patient Dave | Dec 20, 2011
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...
by e-Patient Dave | Nov 27, 2011
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...
by Roni Zeiger | Nov 16, 2011
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...
by e-Patient Dave | Oct 27, 2011
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...
by e-Patient Dave | Oct 11, 2011
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...
by Kathleen O'Malley | Sep 25, 2011
Guest blogger Beth Austin shares her professional and personal advice on choosing the right doctor. She is the principal of Crescendo Consulting Group. I’ve spent a lot of time in my professional life knee-deep in articles on healthcare quality and medical...
by Kathleen O'Malley | Sep 12, 2011
Guest blogger Tami Boehmer shares a recent conversation with e-Patient Dave about the pitfalls of survival statistics and the power of hope. Tami’s blog, “From Incurable to Incredible,” is at www.miraclesurvivors.com. I recently had the honor of...
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