When I was employed in a day job I tried getting into a PHR (my famous “data transfer gone wrong” adventure) as part of my healthcare hobby. What happened threw me for such a loop that I haven’t touched a PHR since: I’d imagined that the data was of COURSE in some well managed neatly organized repository, where great brains (like the best of NASA) could be running analytics, automatically routing information where it needed to be, etc.

Ha! :–) The reality was so different that I stopped dead in my tracks through 2009. My September keynote at Medicine 2.0, “Gimme My Damn Data,” was originally subtitled “…because you can’t be trusted with it.” But I removed that before publication. :–)

In 2010 during my business startup, I put zero priority on having a PHR – I needed to scramble intensely, no time to survey the landscape. I’d decided to advocate for patient engagement, and needed to find how to make a living, while finding people who are in a position to help change the world – meanwhile trying to get myself more firmly attached to reality. (That’s why I like talking to clinicians & street-level HIT geeks at conferences.)

The “data transfer gone wrong” episode led to thinking about a slew of issues, including (as you know) that all that data at my hospital & doctor’s office is unstructured, so what am I gonna do with it once it’s in a system? Certainly not what I’d imagined.

Lately I’ve been thinking it might be time to explore PHRs again. One thing’s certain: I’m only interested in systems and providers that let me manage the data, including taking it elsewhere. I want to be able to show it to any provider in any state or country anytime, and I don’t want to work with any provider who wants to block that.

It’s super-juicy ironic that during the meaningful use talks so many providers wanted to block patient access because “patients can’t handle it” when there’s abundant evidence that much of the data is either mismanaged (as in the *providers* really can’t handle it responsibly) or is not heeded as we’d expect – the many many cases of medication errors, missed allergies, orders that are never fulfilled, and so much more. And that’s a workflow and business process issue.

It became obvious that a lot more needs transforming than just access to our data. BUT, having said that, access can be a huge first step, because while clinicians have hundreds of pressures and priorities every day, patients & families are pretty well focused on the output of all that – what happens at the point of care, dribbling out the end of the process pipeline. Whether the data is in error or the care processes, the patient stands to suffer, and informed engaged patients & families are literally in a position to catch errors.

It’s hard to believe we’re commenting on a post that’s 20 months old. I love a post that has staying power.

Before ARRA things at CCHIT had been moving along
and the ccr vs cda debate was resolving to a CCD
version of ccr that was cda compliant(all exotic
xml stuff). Now that Mark is retired, Drummond is an alternative to CCHIT for certifying and
Meaningful use is only partially based on Cert.
The other part requires the eval of ONCHIT and
nist deciding whether the individual hospital
or eligible professional is doing the necessary
15 to 20 items to qualify.
But neither David Kibbe or Steve Waldren or
Mark Leavitt or Carolyn Clancy are making any
daily remarks about how things are going.
The Hospital systems get more confusing the
interfaces needed for any kind of system seems
to go up by the day and John Halamka’s blog seems
to be one of the only ongoing updates on the
relative state of the chaos.

I thought that Epic users were at least getting
a little interconnected, at least at Kaiser, but
they are not even connected for N and S California.

How are things from the patient perspective?>
are you with MS healthvault or Google Healht
or some other?

Chris Bickford MD

Chris Bickford MD

http://hcrenewal.blogspot.com/2009/06/open-letter-to-mark-leavitt-chairman.html

Shame on me! I knew it and completely forgot to remove the error, which I’ll do now!

Michael Levitt, ex Secretary of the DHHS, just published an opinion piece in the Washington Times that is so violently against the current administration that he would have immediately lost his ability to function in a public/private entity like CCHIT.

Please note, this statement is inaccurate. “Dr. Mark Leavitt, former Secretary of the DHHS and current chair of CCHIT”.

The former Secretary of DHHS was Mike Leavitt, not Mark Leavitt. Dr. Mark Leavitt, before becoming CCHIT chairman, headed HIT organization Healthcare Information Management and Systems Society (HIMSS) and, before that, founded Logician, the EMR that was purchased by GE and is now marketed as Centricity.