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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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.
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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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Information for the Association of Utah Community Health meeting

AUCH sealHere’s information for the talk I just gave to the good folks at AUCH, the Association of Utah Community Health.

  • This talk was based on the speech I gave last summer in Los Angeles at ONC’s “road show” for the people who are rolling out health IT. See this post last summer for all sorts of references and links.
  • You can subscribe (free) to this site (see the Subscribe block at right), e-patients.net (the blog of the Society for Participatory Medicine), and our Journal of Participatory Medicine.

At the live event Friday, we had technical glitches that prevented the planned Q&A, so I’ll invite those questions in comments here, where others can share them!

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“Health IT can improve care, because information can improve care.”

Twitter friend Alicia Aebersold, at George Washington University, just reminded me of this quick video interview recorded last year. I’d forgotten! But I love what it says.

This spring I did a whole speech on the same topic, 35 minutes with slides. That video’s here.

Folks, do you (yes you, the person in your underpants) know what’s in your medical record? Your kids’? Your folks’? Now’s the time to ask – before those records become important in a crisis.

In my speeches I say “Let Patients Help.” Now it’s your turn: do the helping – help your healthcare providers. Make sure the info at their fingertips is correct. How else can they perform to the top of their training?

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Information, at the point where it’s needed, can save a life

At the Joseph H. Kanter Family Foundation’s Learning Health System Summit, at the National Press Club in Washington last month, I was asked to deliver a dinner speech about the power of information to improve the effectiveness of medical care – not just for patients, but for every doctor and nurse at the bedside. Because everyone performs better when they’re better informed.

Important: This was my first major speech that’s not about patient engagement per se – it’s about the value of information, to everyone engaged in any aspect of health or care.

Clinicians, policy makers, everyone can only perform at the top of their training if the relevant information is available where and when it’s needed. That’s IT, baby – information technology – but it’s also culture. We need the will to bring the info to the point of care – and to put an end to information that dies on the vine, unused. We can do it!

If you can’t see the video, click here to view it directly on Vimeo.

About the event:
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