Stream: patient empowerment
Topic: Google fiasco 2009 +10
Dave deBronkart (Apr 12 2019 at 01:51):
I want to capture this history in the FHIR community, because it's IMO important background for the social movement of patients demanding their data ... to which I'm hoping FHIR will become the answer. If we do marketing outreach this back story contains a lot of meat, and some health IT journalists were there at the time so should fully understand.
I believe this story is also why @Grahame Grieve sought me out at a HISA dinner in 2014 where my doctor and I spoke. Which, ultimately, is why I'm here. :slight_smile:
Anyone not interested in the back story, move along - there's nothing to see here :slight_smile: Interested parties, I've started a week-long series of blog posts on the SPM blog. The first two:
April 11: Manage your health data, or trust blindly? Setting the stage for a data disaster, part 2
April 12: Reprise of the 3500 word blog post that became front page news and landed me in Washington, despite having no clue.
The back story:
Right now is ten years plus a month since I announced I was going to put my data in Google Health and MS HealthVault, which led to my discovering how incompetent some people in health IT were (are? I don't know) and thrust me into a spotlight not of my own design.
From an IT perspective, a pervasive theme is the issue of "fitness for purpose." It's the IT professionalism fail that led some to think billing data was a valid proxy for clinical reality. The other was my hospital's absurd decision to declare victory when they had never tested their Google Health interface on real customer data.
Then people were stunned when a patient with no health IT training (me, a random day-job data jockey) discovered the emperor's new clothes were a fiction.
If I recall correctly (and contemporaries like @Keith Boone may correct me) a major problem back then was that there WERE no use cases for that interface - just "Send whatever data you have," which my hospital did. And since no acceptance criteria were defined, the resulting load of crap that arrived could not be found wanting - except by common sense.
More details to come, in this stream as the days go by.
Dave deBronkart (Jun 02 2019 at 03:24):
This thread has shape-shifted into the e-Patient Dave's origin story thread
Last updated: Apr 12 2022 at 19:14 UTC
