by Ileana Balcu | Nov 10, 2015
The series of blog posts at the online community website Crohnology continues for patients with IBD. Duncan Cross has a post that is interesting for anyone with an autoimmune or other disabling chronic condition: Am I disabled? It discusses the Americans with...
by Ileana Balcu | Aug 20, 2015
The site Crohnology, well known patient community for patients with IBD (Inflammatory Bowel Disease), recently started focusing their blog on explaining IBD- focused research to patients. Their most recent blog post describes a study that studied what patients with...
by e-Patient Dave | Aug 8, 2016
We’d love to start a list of other patient-authored papers and posters – let us know in the comments! We know of Dana M. Lewis & Scott Leibrand’s poster about #OpenAPS in June – who else?? We’ve written before about e-patient Sean...
by e-Patient Dave | Sep 30, 2012
I’ll be blunt here: three years ago, late 2009, when I gave my first keynote speech ever, many observers said “Well Dave, that’s fine for you, but you’re the only one.” I replied: if I’m the only one, there’s nothing to talk...
by e-Patient Dave | Jun 19, 2012
Susannah Fox’s post about this two years ago pretty much went over my head: I didn’t get how important it was. But at this month’s White House conference on patient-generated data, I met Nikolai Kirienko, who was the central specimen in her post. The...
by Susannah Fox | Oct 4, 2010
I’m attending a LOT of conferences this fall and over & over I am seeing the power of having patients in the room. e-Patient Connections was a wonderful and well-documented example (in blogs, on Twitter, plus the large in-person audience) as will be Health 2.0 San...
by Susannah Fox | May 13, 2010
Nikolai Kirienko, Crohnology.MD Project Director, is setting a new standard for transparency in research and innovation as he blogs about his work with Project HealthDesign: On days where I could have benefited from the feedback of [Observations of Daily Living] the...
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