e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
#OpenAPS is bearing big fruit, part 1: Dana Lewis’s speech at O’Reilly’s OSCON
For some reason we haven't written much about this here - our only post is from SPM Past President Nick Dawson 15 months ago - but this is such a big deal. Here's an 11 minute introductory video on this - I won't say more, I'll just ask you to click and watch this....
Jody Schoger, co-founder of #BCSM breast cancer community, has passed
We lost a great one today. Jody Schoger @JodyMS was one of the founders of #BCSM (breast cancer social media), the first patient community that started on Twitter and grew into a 501(c)(3) organization, bcsm.org. She passed on this morning, and Twitter is in tears....
Patient solves difficult diagnosis using … an online image sharing service??
The times, they are a-changin': medicine is realizing there can be gold found on the internet, amid all the garbage that's also there. Items: In 2014 a European government started buying Google Ads telling patients "Don't Google it, check a reliable source." Why is...
Cancer: What’s Happening in the Lab that will Change Diagnosis and Treatment?
When a patient receives a diagnosis of cancer it is life changing. Even after treatment and assurance that you are in remission, the cancer threat is never far away. Every time you go for a screening, the fear returns to haunt that maybe this time they will find...
CCCC conference announces inaugural class of palliative care e-patients
Guest post by SPM member Liz Salmi of CCCC, an organizational member and supporter of our Society for Participatory Medicine. Note also (at bottom) that this event provides a model for other organizations to follow: patient participation is enabled by a foundation...
You Won’t Believe What Medicare Just Did on Patient Engagement!
Quick summary for the impatient: Michael's post urges public comment in the upcoming comment period, and ends with this: "If we in the patient community do not raise questions and objections to this critically important MACRA rule, you will definitely not believe what...
White Paper Introduction: “Tech is changing how we think about ourselves” #DocTom10
Next in our #DocTom10 series, which started here. If you haven't read about Tom's preface, and the Foreword by Pew Research, we urge you to. Remember, this was all written a decade ago. Today, Tom's introduction. Please discuss! The key question we must ask is...
“Extremis”: new Netflix documentary on end of life with Dr. Jessica Zitter
We've often written here about palliative care and end of life. (The two are not the same: you can have palliative care without having decided the end is near.) They're, in a sense, the ultimate expression of patient-centered care, forcing the question: who gets...
#DocTom10: Foreword by Pew Research – astounding statistics from Y2K
Next in our #DocTom10 series, which started here. Today we resume our review of the chapters of Tom's White Paper. This Foreword stands on its own, with no comment needed, so we'll just paste it in verbatim. Note: these numbers are from 2000, when the Web was just six...
Susannah Fox: Tom’s legacy #DocTom10
Next in our #DocTom10 series, which started here. This is a blessing - the first post here in two years by Susannah Fox. More about this at the end of the post - for now, let's get to the good stuff. She originally posted this as a comment on Friday's post by John...
Warmly Remembering Tom Ferguson & His Legacy #DocTom10
Next in our #DocTom10 series, which started here. I first met Tom Ferguson in 1994 online (where else?) when he reached out via email to chat about online support groups. I was still in graduate school at the time, and he had come across my indexes of Internet...
Remembering Tom’s death 10 years ago today: #DocTom10, post 4
Next in our #DocTom10 series, which started here. Ten years ago today, Tom Ferguson died unexpectedly. He was in the hospital at the University of Arkansas for Medical Sciences (UAMS), being treated for multiple myeloma. Tom's work back then was captured on his...
