e-Patient Dave

Power to the Patient!

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Let My Data Go: the HIMSS Interop Showcase

Title slide: Let My Data Go

As regular readers know, I feel rather strongly about the power of information. As a data geek, a high tech innovation freak, and a fan of improving health and care, I want the power of data to be set free.

In health IT, that means exchanging data between systems – because if it’s locked up in one system, nobody else can add value to it. And at the point where it might save a life, it might not be there.

And when that’s you, or your daughter, or your mother, or even some male relative, that could make all the difference in the world.

You think video killed the radio star?  In my career in industry, I lived through disruptive innovation, when desktop publishing killed typesetting. I know what power there is when data gets lose and innovators can add value to it. We need that in medicine. And that’s interoperability.

That’s what I’ll be talking about at 4:00 pm Monday in the Interoperability Showcase Theater, at the big HIMSS (health IT) conference in New Orleans next week. If you’re a data geek, or if anyone you know consumes medical services, this issue is important to you. Come give it up for interop – to let my data go!

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Register YOUR voice on The Role of the Patient: take this truly interactive survey

TEDMED 2013 Great Challenges

As I’ve blogged before (here and on e-patients.net), I’m one of the advocates (the Challenge Team) for this year’s TEDMED “Great Challenges” program, co-sponsored by the Robert Wood Johnson Foundation – specifically, of course, The Role of the Patient!

They asked us (the team) to answer five questions. (The original list is at bottom.) I haven’t yet – you can see the other team members’ responses here – for two reasons: I was immersed in my travel and events season, and (probably more importantly) something didn’t sit quite right with me. I figured it out:

It’s upside down to ask us some pre-selected questions – that’s precisely getting “the role of the patient” wrong. So I thought: let’s ask the crowd! Ask the internet what they think the role of the patient is and what it should/could be.

I gave the questions to my friends at Traitwise (see earlier post Engage, Participate, Enjoy!) Traitwise is an interactive, self-adjusting survey tool that responds to user questions. (I have no stake in the company; I just love the idea, because it harnesses the crowd and lets you discover thoughts instead of trying to guess them.)

You don’t just answer the questions – you can comment on them (including suggesting changes), and you can propose questions of your own. And those questions become part of the survey for future respondents. There’s more discussion below, but here’s the survey – dive in!
[Read more…]

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Who gets to say what’s patient-centered? (Hint: the one who’s IN the center)

This is an adaptation of a message I wrote last night to some friends who are participating this weekend in PCORI’s workshop this weekend.  I wish I could be there, but overseas travel was booked for today, months ago.  For newcomers I’ll say more at the bottom of this post, but first, my message to the participants.

PCORI’s charter – its very name – is to develop Patient Centered Outcomes. That raises the question:

Who gets to say what’s patient-centered? We should.

The scientific establishment won’t turn on a dime with this one patient weekend, so what COULD we persuade PCORI and the attending scientists about? My view:

To me the core question of the weekend is: Who gets to say what’s patient-centered? I say, it’s the one who’s in the center. Who else could possibly know if things are balanced around them?

So, I suggest: in any patient-centered outcomes project, patients should participate not just in selecting projects or goals/outcomes (from a scientist-generated menu), but in defining the goals, the desired outcomes, even what they’d like researchers to pursue.

This is a maturing of the patient’s role, and a shift in the researcher’s role to one of partnership rather than “doctor knows best.” The maturing seems to parallel how a kid grows up: [Read more…]

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We perform better when we’re informed better

Here’s a short piece I wrote for an event next Monday, October 29, at the Rijksmuseum in Amsterdam, hosted by KPN, the big Dutch telecom firm.  The title is from a slide I used last spring at the Kanter Family Foundation’s Learning Health System conference. After, I’ll discuss the event – and some provocative questions.
___________

People perform better when they’re informed better

The e-patient movement – “empowered, engaged, equipped, enabled” – presents challenges to our culture: it creates new roles, new expectations, and new beliefs about what’s possible. It creates questions in the minds of educated people: can ordinary citizens, with no medical training, handle the truth? Handle new knowledge? Handle information that’s always lived in the hands of trained professionals?

We can’t see the future, but we can look to precedents – many precedents, in my life and long before.

Thirty years ago computer professionals raised the same questions about letting you and me have computers. It was hard to imagine that you and I, not trained as engineers, could understand these tools, much less do anything useful with them. The same happened in my industry – typesetting – when desktop publishing arrived: it was hard for us, the trained typesetters, to imagine ordinary citizens having fonts on those computers and making pages. But you did, and you do. Do you want to go back?

The problem is that our culture is challenged when tools and information reach people who’ve never had them before.

Sometimes the change is radical. When Gutenberg printed his Bible in 1455, [Read more…]

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Links for Cooper and Partners “Work Well 2012”

I’m speaking today at a relatively new type of event for me – worksite wellness. (I often speak at conferences that include employers, and in May I spoke at the Rich Products company health fair, but this is the first event that’s a seminar for HR and wellness executives about worksite wellness.) The host is Cooper and Partners, a company whose professional content and image are amazing given their new-company status. Keep an eye on these folks – they know what they’re doing.

Here are some sites and resources I’m mentioning.

ePatientDave.com (This website – subscribe free – see box at right)

Society for Participatory Medicine
(“the e-Patient society”)

  • Join as a corporate and individual member
    • Volunteer to lead an initiative (email)
  • The Society’s website
  • The Society’s blog, e-patients.net where I write from time to time (as others do). Free subscription.
  • Journal of Participatory Medicine (peer reviewed journal with narratives and evidence on the status of the movement). Free subscription.

Resources for e-Patients [Read more…]