e-Patient Dave

Power to the Patient!

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Opioids 2: the supply side of the problem – like lethal brush fires

Source: WIkipedia ("Harris Fire"
Source: Wikipedia (“Harris Fire”) outside San Diego, 2007

Last minute update:
Yesterday, as I was drafting this, federal officials arrested six former employees of a drug company for flat-out bribing some doctors to overprescribe fentanyl, which is 40-50x stronger than heroin, the cause of many opioid deaths.

As I’ve said in other posts, this is a complicated subject so don’t jump to conclusions until you’ve read it.

Yesterday, in Opioids. Alarm, and I mean YOU, I posted about how dreadful and drastic the opioids problem has gotten, citing (as just one example) a small high school in Maine where five percent of kids have been dying in every class. Think of how many were in your graduating class, and imagine 1/20th of them dying before graduation.

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How PatientSite handles interop (not). (Screencast demo)

My PatientSite labs screen capture
Screen shot of my lab data from the video below

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.

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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.

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Dear John: *I* want to download my records.

Dear Dr. Halamka,

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?
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#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.

OpenNotes logoWell, 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.

 

 

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“Think, think, think”: message to European Cancer Patients Coalition AGM

View mHealth presentation to ECPC Annual General Meeting on Vimeo.

ecpc logoThis 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.

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