Five years ago this month I wrote my first blog post for e-patients.net: Chemotherapy Fog Is No Longer Ignored as Illusion. Back then the blog was a sandbox, a way for those who knew and loved Tom Ferguson to continue the conversations we’d had with him, on the blog he’d launched just before he died. […]
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 […]
Mama birds: Catherine Fairchild and Laurie Strongin
On February 29, 2012, Rare Disease Day, I hosted a conversation with Catherine Fairchild 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 and […]
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 […]
What’s the future for self-tracking?
Stephen Wolfram’s essay, The Personal Analytics of My Life, begins: “One day I’m sure everyone will routinely collect all sorts of data about themselves.” A Pew Internet survey suggests we have a long way to go: a September 2010 survey found that 27% of internet users age 18+ track their own health data online. There […]
The Power of Rare Disease Patients
I’m honored to post this essay by Wendy White, Founder & President of Siren Interactive: Thanks to the Pew Internet Project, we have a lot of data about ePatients. These empowered, engaged and educated patients (and families) are helping to bring about a transformation of healthcare in this country. Pew’s Susannah Fox has named them […]
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