E-Patients, stand up for the patient voice at Transforming HC 2009, 2/26 in Boston

Late update: If you've read about this elsewhere and you just want to vote for the proposal, click here. You'll see the number of votes and a tiny "Vote For" caption. Click it.

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Prolog: social media is all about user-generated participation, a great thing for empowered patients, but all the Twitter mentions of this event are passive publicity like "Hey there's an event," instead of "Add your voice" as e-patients do! We're empowered and engaged; we create our own dialog; we participate. This post invites you to do so, because the conference organizers have invited us to. Do it!)

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E-Patients to the fore: time to speak up! This is a Boston event but they're taking input from everywhere. Yes!

On Feb. 26 I’ll be attending an evening event in Boston, Transforming Healthcare 2009. Interesting for two reasons:

• Some serious CEO-level voices:
  
  
• James Roosevelt, CEO of Tufts Health Plan (one of the best in New England) and member of the Obama transition team
  
  
  
• Charlie Baker, CEO of Harvard Pilgrim Health Care, my own insurance company, and a great health policy blogger
  
  
  
  
• John Glaser, CIO of the Partners healthcare system (Mass. General and related hospitals)
  
  
  
  
• And more
  
  
• Excellently, they're taking user-generated, online, user-voted questions. Holy cow, yes, event organizer Steve Wardell is using a real Web 2.0 social media tool (UserVoice) to create the conversation in advance, from the community! You get to speak up. (Guess what I think you should do.)

Yes, we get to create (and "vote up") the questions we'd like asked of these people. There's expected to be serious media coverage, too.

But here's the thing: I have serious concerns about the questions that are already in the list and top-voted. They're computer-oriented, not patient-oriented. Example:

How patients should expect to impacted by the EHR incentives
Patients will need to understand issues around privacy, access, and portabilty of their digital records, as these records become more pervasive as a result of the new incentives. How can we engage patients as supportive partners in making sure the electronic information in their records is accurate, complete, and being appropriately contextualized?

We?? Who's "we"? Not the patients, evidently!

I created a question, just as you can. You can vote for mine (free), comment on it (hint hint), or add one yourself. Here's mine:

What about enabling user communities like ACOR.org?
We're missing a *major* opportunity if we think health IT is limited to giving providers new systems. In my own cancer, sure I read & shared my online medical data in PatientSite, but the most valuable info I got anywhere was from my ACOR cancer patient community. Every condition needs something like this. Microscopic cost, enormous payback!

Attend if you can. (Let's have a meet-up!) But even if you can’t, speak up online:

• Vote for the questions or create ones of your own
  
• If you’re a blogger, blog about it and ask your readers to participate too.
  
• Same if you’re a member of any healthcare community.

See, if we don’t speak up, conference attendees will rightly conclude we don’t have anything we want to say. And they might even conclude there aren’t many empowered patients who have anything that they want heard.

Plus, if you and I haven’t met, we can have a tweet-up and meet-up. Do it.

If money’s your only reason ($79) not to attend, volunteer: “We’re looking for volunteers who can help us get our message out by blogging, taking photos at the event, and helping with logistics. Let the organizers know you’d like to volunteer by emailing us here.”

Wardell has given us an opportunity to be heard. Good for him! Go click, vote, participate.