e-Patient Dave

Power to the Patient!

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Resources from today’s lecture at the World Parkinson’s Congress

Major updates made Sunday 10/6.

Panorama of World Parkinson Congress auditorium

Today I had a rare privilege and challenge: I spoke to a kind of audience I’d never addressed before – the World Parkinson Congress in Montreal. I was one of four speakers in a two hour session “New Views of Managing Parkinson’s Disease”; we each had 25 minutes plus Q&A. Above is a photo I took from the stage – a big hall at the Palais de Congres, with over 2,000 in the room.

Click to visit the book's sale page
Click to visit the book’s sale page

I composed a talk about patient empowerment (in the context of Parkinson’s) based on things I’d learned about the disease community – and, importantly, research issues – from two good friends with the disease, Sara Riggare of Sweden and Perry Cohen of DC. They must have coached me well, because four times I was unexpectedly interrupted by applause. It was webcast, and video of the session should be published in a day or two.

One item I noted in the talk was a brand new, magnificent book [right] that was launched at the conference, conceived, written, edited and produced entirely by patients. In my view this book is the instant exemplar of how patients can define their disease to the world: the experience of getting the diagnosis, exploring treatment options with each other, coping with life with the disease, and much more. It’s a gorgeous, browsable, full color coffee table book – you can jump in anywhere. More on this book later.

Here’s a version of today’s slides, modified to be more understandable without the audio:

There was enough interest that we added an unscheduled breakout session in a side room – thanks to organizer Eli Pollard for her quick response!

The unplanned session truly had no plan – we started talking and taking notes. In a sense this was an example of a point I make frequently: patients know what patients want to know. It was great to see the fire and hope in the eyes of these patients and caregivers who want so much to define the future on their own terms, given the constraints of the future they own. I took notes as we talked (using the room’s projector) and promised to publish them.
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Hey Watson! Let patients help!

USNews Watson article (click to visit)Katherine Hobson has a new article about IBM Watson in the US News and World Report Best Hospitals issue:

The IBM Wiz Kid’s Work on Cancer
Watson’s foray into oncology is only the first baby step toward applying “big data” to thorny medical problems.

As this giant Jeopardy-winning supercomputer continues its venture into medicine, it’s fascinating to watch, but I continue to scream “WAKE UP!!” to anyone at IBM who’ll listen, because I think there’s a vast opportunity that’s not being pursued. And we need it! (I’m quoted at the end of the article, opining on this.)

What they’re doing

I love that they’re exposing Watson to gobs and gobs of previous cases, as the article describes, so it can sniff for patterns. If there’s one thing a well programmed computer can do, it’s sniff for familiar patterns.

And I love that they’re using it to suggest diagnoses and treatments to the doctor, not make diagnoses or recommendations. (I’ve long said that I doubted IBM’s lawyers would want to be anywhere near liability for a wrong diagnosis and its consequences!) An “information-suck-and-sort” machine should do just that.

(At least for today. Who knows what we’ll think in a few years; I’m not in a position to predict.)

What they’re not doing (yet)

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“Typesetters have proofreaders. Doctors don’t.” Let Patients Help!

iHealthBeat screen capture (click to visit the article)
Click to visit the article

Please see the “call to action” at bottom of this post: if you have a story of patients improving the chart – or a provider preventing it – put it in a comment on iHealthBeat.
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I have a new essay in iHealthbeat’s “Perspective” feature: Patient Participation: Let Patients Help With Medical Record Quality, Completeness.

This was a pretty great invitation. As it says at the bottom of the site, “iHealthBeat is published daily for the California HealthCare Foundation by The Advisory Board Company.” CHCF (the foundation) has done a ton of great work over the years at understanding the practical realities of medicine as it works out for families and communities, and The Advisory Board Company is a respected, high profile company that advises health leaders of all sorts. So when Managing Editor Kate Ackerman wrote to me – six months ago! – inviting an essay, I was thrilled:

I wanted to see if you’d be interested in writing a Perspective article for iHealthBeat on the importance of patient engagement in health IT efforts. Here’s a link to our Perspectives archives so you can get a better sense of the feature: http://www.ihealthbeat.org/perspectives-archive.aspx

One never knows why the timing works out the way it is, but it didn’t work then, and when she asked again recently, it did. Of course, back then the angle wasn’t clear to me, and this time it was: Typesetters have proofreaders; clinicians don’t. Let patients help!

If you want to support the movement, see if there’s something you could add an anecdote in the comments on that post – a story you know, first-hand or close, where patient and family engagement in the medical record prevented a disaster. Or helped in some smaller way.

 

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My talk at NCSBN (National Council of State Boards of Nursing)

NCSBN website (click to visit their site)In August I gave one of my most successful speeches ever, at the annual meeting of the National Council of State Boards of Nursing (ncsbn.org). These are the people who do board certification of nurses and, when necessary, look into cases where discipline may be needed. In short, these are people for whom quality makes all the difference in the world; it is their work.

I was inspired and thrilled to be invited to speak to them. As always, we had a lengthy call to plan the focus and objectives of this talk. Here’s the video – I’m even more thrilled that they hired such a great video company! Multiple cameras, high quality slide rendering, and terrific editing. Thank you!

The video doesn’t show it, but the audience gave a standing ovation. It’s a wonderful feeling to connect with people at that level.

If you can’t see the video, click here.

Evaluations:

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14 minute “Show Opener” speech at the Consumer Health IT Summit last week

Slide from my talk (click to watch the video)Who says the gummint can’t move fast??  Last Monday morning I gave the opening talk in Washington for the Consumer Health IT Summit, and holy cow, the video’s already been edited and is live on YouTube!

If you can’t see the video below, click the screen capture at right to view it on YouTube.

(Caution – them same gummint people live with policies that didn’t allow me to plug in my computer; we had to use theirs, which of course hasn’t been upgraded from PowerPoint 2007 yet. The contractors assured me my slides would work fine, and after a half hour of emergency surgery they mostly did, except the one where the text came out black and the slides that kept changing spontaneously – always fun for a speaker to deal with. But the message got across!)

This is really important, folks! Speak up! Get involved!

There are rules and laws and regulations that say you DO get to access your data, and it’s a Federal civil rights violation for a provider to tell you no. And it’s really good that our data will get liberated, because that means innovators can create software and gadgets to do fancy and useful things with your data. And your kids’ data. And your elders’, and your friends’.

Educate yourself – “free your mind,” as we said in the Sixties. The new era is coming – let patients help! And to do that, you gotta have copies of what your doctors see. Get involved.

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How not to be patient-centered or customer-centered

Room 313 signs at my hotel
(This photo is explained at bottom)

This is off topic (a business traveler issue) except that there are strong parallels with the important trend of wanting to make medicine more patient-centered.  In my speeches I often say this isn’t very different from what other industries do – look at things from the customer’s point of view.

(In medicine a year ago this was announced (appropriately) as a big new insight by the Institute of Medicine – “a learning healthcare system is anchored on patient needs and perspectives.”)

I used to think that in the future of elder housing, Marriott might be a really good vendor someday. Not so sure, right now.

I’m staying at a Marriott, and as usual their “iBAHN(R) Wireless High-Speed Internet” sucks.  (I measure speeds with the CNet bandwidth tester; this hotel’s running at 400-500, compared to for instance the Sheraton New Orleans at 2500-4,000.)

I mentioned the speed problem to the excellent woman who gave me great service at the reception desk and she said they know, they’re trying to get out of their contract with iBahn.

“But,” I said, “if Marriott knows it’s bad, why are they still charging $12.95 a day for it??”

See, if you look at anything from the customer’s point of view, you just wouldn’t do that – would not charge full price for something you know isn’t working as you advertised it. (Advertised & sold as high speed; it isn’t, and you know it.)  But I’ll guarantee there’s someone at the Marriott home office who views the situation one of these ways:
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