patient engagement

September 8, 2011 By e-Patient Dave 1 Comment

“I beat cancer so I could dance with my daughter at her wedding”

I’m thrilled that our government has put up a great new website, www.HealthIT.gov, with tons of info about electronic medical records, both for providers (docs & nurses) and for patients & families. I’m even more thrilled that they had the good sense to drive home the impact with five real patient stories – some good, some bad – where medical records or the lack of them) made a difference.

And I’m REALLY thrilled that one of them is about my daughter and me. :–) Click the picture to go to the site.

So much of health IT discussion is about the geeky “CIO” (chief information officer) stuff, and loses track of what it’s all about: people’s lives. Congratulations and thanks to the good people at that part of our Department of Health & Human Services – Josh Seidman, Claudia Williams, Lygeia Ricciardi are the three I know best – for this TERRIFIC campaign: “Putting the ‘I’ in Health IT.” Yes.

August 12, 2011 By e-Patient Dave 4 Comments

Views and languages for “Let Patients Help”

^{Updated 11/4/2011}

This is an ongoing tally of response to the Let Patients Help talk at TEDx Maastricht, April 4, 2011. It went up on TED.com on June 29, got 50,000 views in the first 24 hours, and has since been traveling around the world.

In my last day job I worked in analytics (measuring Web traffic), so of course I’m going to track this baby.

^{[Read more…]}

August 4, 2011 By e-Patient Dave 1 Comment

Links for the Consumer Stakeholder working session

Here are links to resources I mentioned in today’s session. First, I forgot to mention – the National eHealth Collaborative (NeHC) has started a great Consumer Consortium in Washington, bringing together over 150 consumer oriented groups. They’re accumulating a substantial inventory (list) of tools, links, resources – all kinds of things to encourage consumer engagement. Encourage groups to join!

Today’s slides are at bottom. Here are the items I mentioned in today’s talk:

VA’s “Blue Button for All Americans” challenge – $50,000 to the first PHR developer to install one in 25,000 providers. (Click for details.)
Example apps told to us by patient groups yesterday:
- i-Inject Injection Tracker (for MS and anything else)
- Parkinson’s Toolkit, from the National Parkinson’s Foundation
- Seizure Tracker – developed by a parent
Visible Body (a paid product with free demo) – I’ve proposed someday “mashing this up” with our own scan data or other data, to create “Google Earth for my body”
Google Body Browser – a very very primitive free alternative
Blog posts about the Robert Wood Johnson-funded OpenNotes project
- My first one, including the Seinfeld episode
TED talk by Wired editor Thomas Goetz about redesigning our medical data
“Consumer” or “Patient”? My post last December.

Here are the slides: [Read more…]

July 26, 2011 By e-Patient Dave 3 Comments

Special event: TED Conversation on “Let Patients Help”

I’m having so much fun with this TED video (see earlier post) that I hardly know what to say. The best thing is that the simple message “Let Patients Help!” is spreading around the world – it’s got over 180,000 views so far, and volunteers have added subtitles in nine languages – most recently Persian (Farsi) and Korean. People are passing it from friend to friend to friend – clearly, this has tapped into a universal desire: let patients help heal healthcare.

Yesterday the TED people even gave it a vanity URL: http://on.TED.com/Dave. How fun is that??

The next big thing is a live “TED conversation” Wednesday at 1:00 p.m. EDT (10 a.m. Pacific, 7:00 p.m. in Central Europe, etc). The topic ties into one of the key statements in the video: “Patients are the most under-utilized resource” in healthcare. The question:

Why is the patient
the most under-used resource in healthcare??
How did that happen??

To participate, some preparation is required; instructions below:

About the event

TED Conversations are online discussions about TED-worthy topics. Many are started by members of the TED community; you can start one yourself. Here’s the Conversations page.
Some Conversations are live one-hour discussions about a question that’s been proposed by a TED speaker. That’s what this one will be.
The question is posted a day in advance, at 3 pm ET. Comments will not be open until the event starts.
You’ll be in a group discussion room, typing with other people. People post questions, and I’ll see them and answer as much as I can. (A moderator will be watching for spammers and trolls.)

Preparation

Create a TED.com account. Do this now, before the event: http://www.ted.com/pages/114
Start thinking now about what you’ll want to say during the event.
Tell friends, if you want.

The event itself

As 1 pm ET approaches, sign in and go to the event URL http://www.ted.com/conversations/4547/live_ted_conversation_july_27.html
Questions will open when the event starts, at http://on.ted.com/ePatientDaveQA
Post-event, the discussion will stay open online for one or more weeks.

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Where did this speech come from, anyway?? Who started this?

It happened at TEDx Maastricht, a distinctive, terrific event last April 4, in the south Netherlands city of Maastricht. (Here’s a Blogger Grand Rounds post with many videos from the event.) Perhaps most significant, the first speaker announced for that event wasn’t a big name celebrity, it was a patient. Just a patient. And that’s what the event was about: putting the patient at the center of the whole health conversation.

Next year’s event is already scheduled – April 2, 2012. I’ll be in the audience if at all possible, because there were some sharp talks, and event production was excellent.

TEDx Maastricht is produced by Lucien Engelen, “health 2.0 ambassador, speaker, author and Director of the Radboud REshape & Innovation Centre at UMC St Radboud in Nijmegen.” Reshape? Yes – as in, taking healthcare apart and putting it back together, better.

July 21, 2011 By e-Patient Dave 7 Comments

Putting the I (or eye!) in Health IT: ONC’s regional meetings

Updating again on August 11 at the Los Angeles meeting.

Updated 7/22 – added several resources and these bullets on connecting. What was I thinking, not mentioning this?? Get social:

Follow me on Twitter @ePatientDave
If you want to friend me on Facebook, puh-leeze tell me where you came from – it’s ordinary social media etiquette.

_________

This week I attended the second in a series of four regional meetings being conducted by ONC*, reaching out to the Federally funded organizations that are making health IT a reality throughout the country. I was the Wednesday lunchtime keynote speaker. (What a time slot – there’s nothing like a “How I almost died” story at meal time! But the message came across, deeply. Great people, very dedicated!)

Here are links to resources I mentioned in my speech, and a few more:

[Read more…]

June 2, 2011 By e-Patient Dave 14 Comments

Costco magazine’s debate for June: “Should you seek medical information online?”

Update June 8: I’ve edited this text in an effort to make it more constructive and informative. I did this after getting feedback from several people that it came across as more negative than I had intended. Thanks for the feedback! Everyone I know agrees that healthcare would improve if we all listened better, and I guess that includes bloggers…

As a longtime loyal member of Costco, the warehouse shopping club that sells nothing but great quality at amazing prices, I gladly said yes when they approached me to participate in their monthly “Informed Debate” feature, because the topic was seeking medical information online.

The feature is in the June edition, here. (It’s page 16 in the print edition.) I didn’t get to compare submissions with my “opponent,” so it wasn’t really a debate; we just submitted our thoughts. I’ll paste in my 400 words here, and then I’d like to address the concerns expressed by the others.

So: should you seek medical information online?

My response: Yes.

Here’s my response as I submitted it. The version that went to print was edited for style and length.

[Read more…]