I’m a health data nudist: I don’t care who sees my “privates,” if doing so furthers the cause. And the time has come to push the issue, because my hospital is stonewalling, and that is just so not okay: as comments on my previous post show, this truly impedes care. And that must stop.
To end any mysteries about the much-touted PatientSite portal, in all its 1990s glory, I’ve decided to publish a complete 15-minute walk-through of everything in my chart, when I’m logged in PatientSite at Beth Israel Deaconess, the hospital that magnificently saved my life ten years ago.
Dear John: I still want to download my records! Gimme My DaM Data!
Let us start by reviewing our anthem: “Gimme My DaM Data – it’s all about me so it’s mine,” by the magnificent Ross Martin MD and his wife Kym, multi-cancer patient whose care has been affected by lack of access to her health data. “DaM” is Data About Me, Kym’s more-polite version of my cussing. Read on for why this is newly urgent.
Dear John: *I* want to download my records.
I want to download all my data from my 14 years as a patient at Beth Israel Deaconess Medical Center. What button should I push?
In June you said on your blog (left, top) and on MedCity News that no patient has ever asked for that, but your tech support says you don’t have a way to do it (see red outline).
Tech Support said I should call Medical Records. I did, and they said they can’t deliver things electronically. So where is the link you say nobody has ever used?
[Read more…]
#OpenNotes mashup! 20th birthday of Seinfeld’s “Elaine’s a difficult patient” :)
“It was twenty years ago today / Sgt Pepper taught the band to play” … well, today’s the 20th birthday of Seinfeld episode #139, October 17, 1996. This was the famous segment where Elaine looked in her chart and found she’d been marked “Difficult.” What followed was hysterical, as she got lied to and ultimately recruited Kramer to impersonate a doctor (“Doctor Van Nostrum”) to get her records.
You see, when this episode aired, Elaine did not have the right to see her chart. The HIPAA law had been passed in August 1996 by the legislative branch, but the regulations giving her access rights had not been created yet by the executive branch.
Well, things have changed, and change can be good … and in a delicious twist, the OpenNotes people got me to impersonate Kramer impersonating a doctor, in a new video mashup. Enjoy.
Here’s a hashtag: #ElaineDifficult20.
“Think, think, think”: message to European Cancer Patients Coalition AGM
View mHealth presentation to ECPC Annual General Meeting on Vimeo.
This is a quick first post to get this online before the meeting finishes. I hope to add more notes below.
I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.
What questions should researchers ask about “the weekend effect” in hospitals?
Update: I’ve changed the headline, because people kept answering the wrong question.:-) The right question is here:
Attention patient voices around the world: what questions should researchers look at to see if there is a difference between weekend and weekday services in hospitals?
In the UK a major debate is underway about the weekend effect in hospital services: are they less safe, how are they different, etc? The image at right, from Wikipedia, is one example: the red line shows that death rate for stroke patients improves dramatically when nurse coverage is not close to zero.
I’m on the BMJ editors’ patient panel, and Rosamund Snow, the BMJ’s patient editor, points out that from the patient’s perspective there’s a lot more to look at than death rate.
That’s a pretty crude measure of whether a hospital’s performance is affected, eh? “What are you complaining about? She didn’t die, did she?” What about things like falls, medication errors, access to needed surgery, and on and on and on.
So Rosamund has decided to seek patient thoughts on the subject, hallelujah.
Of course UK experience is important but what are your experiences in any country? Mostly we’re seeking patient experience, but physician experience in other countries could be useful, especially if a system made a change that created a clear difference, better or worse. Both data and anecdotes are welcome.
Most important, though: What questions should researchers look at to see if there is a difference between weekend and weekday services?
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