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October 17, 2016 By kristin.gallant 1 Comment

#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.

 

 

Filed Under: Health data, Health policy, Participatory Medicine 1 Comment

June 5, 2016 By e-Patient Dave 5 Comments

“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.

[Read more…]

Filed Under: Clinical trials, Culture change, Events, Government, Health policy, Innovation 5 Comments

May 16, 2016 By e-Patient Dave 10 Comments

What questions should researchers ask about “the weekend effect” in hospitals?

Death rate for stroke patients (red line) is worse as nurse coverage shrinks
Death rate for stroke patients (red line) is worse as nurse coverage shrinks. From wikipedia.org/wiki/Weekend_effect May 16, 2016

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?

Filed Under: Health policy, patient safety 10 Comments

May 10, 2016 By e-Patient Dave 5 Comments

Vice President Biden’s potent speech about the importance of data in cancer

I’m at the 7th annual Health Datapalooza event in Washington. What I have to say here about this conference is subjective, my gut feel, because I haven’t been at most of the previous ones, because they were largely about the business side of health data – there hasn’t been nearly enough focus on the people who actually have the problem: the patient and family.

This year’s different. It’s managed by a different organization (Academy Health), and a lot of strong patient voices are involved, on stage and behind the scenes. There’s a whole Consumer Track, in addition to all the business things going on. And yesterday we saw a speech by somebody who most definitely fits the category “the people who have the problem.”

Vice President Joe Biden’s son Beau died a year ago this month of glioblastoma, a nasty nasty brain cancer. For his talk I left the main room and went to a side viewing room so I could record it on my iPad.


[Read more…]

Filed Under: Government, Health data, Health policy, Uncategorized 5 Comments

February 5, 2016 By e-Patient Dave 7 Comments

“Knowledge is Power. Power to the people.” (Guest post for Philips Healthcare)

For healthcare to achieve its best,
empower the patient and family.

Here’s a composite of four quote graphics Philips tweeted yesterday for World Cancer Day:

Memes Philips tweeted with links to the post

I’ve had the good fortune to cross paths with Philips Healthcare several times, most recently for a speech (video) at the big RSNA radiology convention in Chicago. I just love what they’re doing in partnership with REshape and Innovation Center at Radboud UMC, where my crazy-amazing friend Lucien Engelen is rapidly creating the future of health and care with Philips and Salesforce.com. Seriously: watch what will come out of that threesome!

So when Philips asked me to do a guest post for yesterday’s global #WorldCancerDay, I said sure. It ran on their blog yesterday.

“Knowledge is Power. Power to the people.”

For healthcare to achieve its best, empower the patient and family.

When social change meets innovation, new things become possible. That’s what’s happening in the patient world, as “participatory medicine” is empowered by patient access to all kinds of useful information.

When the Web was born the term e-patient was coined by “Doc Tom” Ferguson to describe a new kind of patient, no longer in the dark but thoroughly empowered to achieve new things – because they have unprecedented access to information. The idea has matured and deepened, and now, ten years after Ferguson’s death, is coming of age with the signature catch-phrase ‘empowered, engaged, equipped, enabled’.

It’s a moment we should celebrate, because for too long medicine has edged away from the changing landscape of consumer power. Every industry from music to travel to supermarkets has gone digital, sharing knowledge and power and flexibility with their consumers, but medicine has lagged behind: many are not on board, and it’s holding healthcare back.

This is serious stuff: the information revolution has touched my medical life more than once – sometimes in life-saving ways:

[Read more…]

Filed Under: Culture change, Health data, Health policy, Participatory Medicine, Patient-centered tech 7 Comments

January 18, 2016 By e-Patient Dave 2 Comments

Fighting for social change: on Martin Luther King day, meet Marshall Ganz

Moyers Ganz interview screen capture
Click to watch the interview (33:43) on the Bill Moyers site

Last Friday I posted about what I see as the coming culture war, continuing the theme of last year’s posts about the need to change medicine’s beliefs about the role of patients in health and care.

Today, for Martin Luther King day, I want to talk about what it takes to create a movement that really does accomplish change.

Marshall Ganz is a master of movements. I first heard of him during a retreat in 2012; you can see on his Wikipedia page all the movements he’s been involved with, from the Freedom Riders in Mississippi to the United Farm Workers to the Obama campaign. Successful movements.

What does that take?

Here’s how PBS’s Bill Moyers introduced his 2013 interview with Ganz:
[Read more…]

Filed Under: Culture change, Health policy, Leadership 2 Comments

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