Society for Participatory Medicine
e-patients.net blog
e-patient stories
e-patient stories, end of life, others' e-patient stories, pts as teachers
HIT Journalist becomes patient advocate after seeing the danger of uncoordinated care and poorly designed workflows
Neil Versel, a HIT journalist, relates a very touching story of his father’s care at two different hospitals: one was uncoordinated and prone to errors and near misses, another one was quite a good experience. Unfortunately Neil’s father had a rare poorly known disease (MSA) and he died from it. The whole story with details is here: http://www.meaningfulhitnews.com/2012/05/17/mark-versel-1944-2012/ [...]
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Regina Holliday / Ted Eytan interview: StoryCorps audio, now in the Library of Congress
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 tells in public speaking, blogging, and – most especially [...]
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SPM member Akiva Zablocki: “Step One to an Informed Decision: Convene an Expert Panel”
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, both for his story and for how he’s conjuring up an initiative – a manifesto. [...]
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Visualize This: An e-Patient’s Medical Life History
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. ____________________________________________________________________________ Katie’s self-crafted medical timeline (Click to enlarge; see story below) There is some recent thought that self-tracking or data gathering is “a manifestation of [...]
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Hugo Campos: compelling 3 minute video (Medicine X promo video)
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 call to action, for patients to have access to their [...]
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Mama birds: Catherine Fairchild Calhoun and Laurie Strongin
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 and reasons to laugh when I think I’d just sit down [...]
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Robert P. Krause dies, age 90 – was an engaged patient for 85 years
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. The tweet: Truly inspiring. An empowered patient before the term was [...]
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The impact of the internet on one man’s life
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 of leaders and heroes — those who seek [...]
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An e-Patient Goes to the Eye Doctor – and, ahem, expresses himself
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 experienced patient advocate, but it may be useful to newbies. (If [...]
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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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