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 e-Patient Dave | Jan 19, 2012
Thanks to Ellen Khalifa at Scrubs and Suits for a nice introduction to SPM, “A Chance to Get behind the Wheel: the Society for Participatory Medicine.” http://bit.ly/wFd9Ep “For decades baby boomers have been associated with movements advocating...
by e-Patient Dave | Jan 19, 2012
It’s one thing when we “talk amongst ourselves” in our own circles; it’s a whole different thing when the message starts popping up in *mass media*, where it reaches people who had no idea. So it’s big news that we’ve had TWO...
by e-Patient Dave | Jan 18, 2012
My annual physical is this Friday. Â Since my doctor and I were among the guinea pigs participants in the OpenNotes project, I just got this reminder email: Message Date/Time:Â 1/17/2012 10:00:06 AM Read Date/Time:Â 1/18/2012 7:19:08 AM From:Â OpenNotes, Study...
by e-Patient Dave | Jan 17, 2012
Updated 9:38pm ET – fixed many broken links :-/ I’m spending today (ONLY today, unfortunately) at the MIT Media Lab’s third annual Health & Wellness Innovation event. Â It’s a two week competition – six teams pursuing some terrific...
by e-Patient Dave | Jan 12, 2012
Quick note as I run to the airport – Last May we reported on a study in process at Emory University about whether a “safety-net” (poor) population would engage with a personal health record. The preliminary results in that poster showed that what...
by e-Patient Dave | Jan 12, 2012
by e-Patient Dave | Jan 11, 2012
Regular readers know that last year Jessie Gruman of the Center for Advancing Health was treated for her fourth cancer. (Knock it off, willya??) (Diagnosis post here...
by e-Patient Dave | Jan 10, 2012
Edited a few minutes after the original post. Over on the Harvard Business Review blog a post yesterday is stirring up discussion. I hope well-informed SPM members can help shed some light in the comments there, citing as many specifics as you can. (As I compiled the...
by e-Patient Dave | Jan 7, 2012
I just learned that the organization of SPM president-elect Sarah Krug, Cancer 101, has gotten what I consider a major acknowledgement. On his blog GeekDoctor.blogspot.com, John Halamka announced last month that his wife Kathy was newly diagnosed with breast cancer....
by e-Patient Dave | Jan 7, 2012
We often note here that quality improvement in hospitals seems excruciatingly slow to happen, and engaged patients and families need to keep their eyes wide open, because sometimes a fix doesn’t require being a genius. For instance, see the cartoon at right...
by e-Patient Dave | Jan 7, 2012
From SPM member Ileana Balcu – A post that might be of interest to our group – about the importance of diagnosis – from a former president of Society of General Internal Medicine, Robert Centor. A personal reflection on 2011 – the importance of diagnosis...
by e-Patient Dave | Jan 5, 2012
SPM member Fred Trotter is a member of the open source / innovator community that knows “hacker” as a noble word – people who disregard how something was intended to be used (by its designers) and rearrange the parts to suit their needs. Today on the...
by e-Patient Dave | Jan 3, 2012
Followers of our “gimme my data” series will get a rough-edged refresher about current reality by the well-written and raw story of @WilliamDale_MD’s Sunday post Medical Health Record: A Personal Journey Down the Rabbit Hole. A great narrative by a...
by e-Patient Dave | Jan 3, 2012
As we work to re-engineer both the culture and the structure of healthcare, one question that constantly faces e-patients with uncommon or difficult conditions is: Where do I turn, to find genuine value? The traditional answer is “ask your doctor,” and...
by e-Patient Dave | Jan 1, 2012
Follow us on Twitter (@S4PM), Facebook, and LinkedIn!  Here’s how to become a member, individual or corporate. Our publications: Our blog is e-patients.net. Subscribe via RSS or email, tweets etc. Our open-access journal is the Journal of Participatory...
by e-Patient Dave | Dec 31, 2011
It’s fitting that our last post of the year should be about a patient community … winning an award! ACOR’s “KIDNEY-ONC” kidney cancer patient community was recently honored with the “Maily” Listserv Choice award in this, the...
by e-Patient Dave | Dec 22, 2011
To understand a headline – especially a year-end “Top N” list – you need to look under the hood and find their criteria. Yesterday the New York Times Well blog posted The Most Popular Health Topics of 2011. I looked, eagerly, to find the rise...
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....
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