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Role of Individuals in Determining the Future of Personal Health Records

Posted Oct 22 2008 9:31pm

David Lansky, Senior Director for Health Programs and Executive Director of the Personal Health Technology Council at the Markle Foundation was interviewed not long ago by iHealth Beat.  ( The complete transcript of the interview is available online. The complete audio of the interview is available online for download in mp3 format.)

In the interview he emphasized the role of individuals in determining the future of personal health records.  He believes health information originates with and belongs to individuals, but not enough work, such as focus group surveys or evaluation studies, are being conducted to "really understand where is the value or where is the risk as perceived by the patient."

He goes on to state that "Ultimately, the constituency for a RHIO, the basis of payment for a RHIO, the enthusiasm for sharing information and pressuring local stakeholders to share is going to come from the public.  And, conversely, if the public thinks this is not a trustworthy system and they're unwilling to allow their data to be shared across the community, these things will be gone in a heartbeat...  So it's extremely important that the consumer representatives be fully involved at the get-go." ( De ja' vu anyone?  This sounds like "melt away into the air" from a couple of days ago!)

So I agree with Mr. Lansky!  iHealthRecord did ask me to complete a survey about my experience with my PHR, but I think they could do more to find out how to make this thing work.  Because right now, from my perspective it was/is a waste of my time!

As for RHIOs, I don't see enough representation of consumers at stakeholder meetings.  I also see little engagement of consumers and patients in any sustainable way!

For example, Santa Barbara seems stuck with getting all of the providers to sign the agreements -- and these are the people who have bee en sitting around the table for years!   (Yes, the board members!) What if they threw a little consumer involvement into the mix?   And, a little data gathered from focus groups, surveys, key informant interviews, etc?  A few believers here and a few advocates there might help convince our large provider organizations to take the next step -- because it is what we want!    

The current efforts are focused on getting physicians to sign-on and use the care data exchange, but our large and influential providers (except for two:  Cottage Health System and Santa Barbara Regional Health Authority) are dragging their feet with the agreements!  Our physicians and consumers want/expect/deserve to see real collaboration among all of our community's healthcare leaders!

Hummm!  I guess my post on consumer involvement ended with a little (well deserved) rant! 

Santa Barbara:  lets get on with it!

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