e-Patient Dave

Power to the Patient!

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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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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?

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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.


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“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:

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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:
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Washington Post and that viral coffee mug: two important posts on the e-patient blog

Google doctor mug
Photo: facebook.com/TheEmergencyMedicineDoctor

A quick note to draw your attention to two posts this week.

First, the coffee mug at right has gone crazy viral on Facebook, with over 100,000 shares in the first few days. It’s a great big mudpuddle splash, smack into the changing e-patient reality compared to how many doctors were trained. Yes, there’s junk on the internet and some people (including some patients) are loco. That does not mean patients should just shut up and expect the doctor to know everything. So, on the e-patient blog I posted this explanation:

The truth about that “your Googling and my medical degree” mug

Second, yesterday’s Washington Post had a great, well researched and comprehensive piece about medicine listening to patients. Reporter Susan Allard Levingston interviewed and cited many people I know and several I don’t, including my doctor Danny Sands, Mayo’s Victor Montori, ACOR, SmartPatients, Inspire.com, PatientsLikeMe, the BMJ’s patient partnership program that I’m a part of, and more.  My post about it:

Washington Post nails it about patient-clinician partnership

The timing of this clash couldn’t have been more perfect to illustrate the topic of my Grand Rounds as Visiting Professor at the Mayo Clinic last March: We are at the cusp of a profound paradigm change in medicine.

The whole concept of what “patient” can be and do is evolving – but most people don’t know it. Many patients and many docs think patients couldn’t possibly know anything useful; that is no longer the case, and culture clash is happening.

Honestly, this is the work of evangelism – spreading the word, making the case. And you know people are starting to notice when “the empire strikes back,” as illustrated by that coffee mug piece.

Please:

If you don’t yet know about the Belgian health department’s anti-googling campaign (taxpayer-funded!), and you don’t yet know about the British teen who died because her docs told her to stop googling, go read that coffee mug piece. Then read the comments from patients who helped their docs make a correct diagnosis. Then skip over to the Washington Post piece, and read about “the real reality.”

And spread the word! Culture change only succeeds when people spread the word. Thank you!