e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Just Say “No” to Medicare’s MACRA Tokenism
On social media and at meetings like Health Datapalooza, our favorite federal bureaucrats assure us of their commitment to open data and patient empowerment. But those are just soothing words; federal regulations are law. On April 30, I posted on e-patients.net an...
Fighting Cybercrime: One Hacker at a Time
Computer Crime is the misuse of a computer or associated electronic networking system in order to commit illegal and unlawful acts. Computer crimes range from the illegal use of the internet to the unlawful accessing of information stored in computer systems. In...
OpenNotes study in BMJ Quality & Safety finds patient-doctor “relational benefits”
As regular readers know, we've written many times about OpenNotes, the project funded by Robert Wood Johnson that blew the doors off of beliefs that bad things happen when patients see their charts. (We blogged about the original results in 2012.) Now a new study in...
#OpenAPS is bearing big fruit, part 2: Quantified Self presentation in San Diego
A truly significant moment in the history of medicine happened last Wednesday. I say that after attending almost 500 conferences and policy meetings in the past seven years, and I don't say it lightly. Something many people think is impossible was presented live on...
#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...
