Well, yes. My own unlikely, accidental trajectory to fame started 6.5 years ago when I blogged “I’m putting my data in Google and HealthVault.” http://patientdave.blogspot.com/2009/02/im-going-with-google-health.html In that case it wasn’t to spur medical developments, but it was the closely aligned (IMO) idea of spurring technical innovation by seeding a pile of data, without which innovators have no fuel. (That’s from my VERY old pre-e-Patient Dave blog.)

The idea of “data as fuel for innovators” became a recurring theme — as did data quality. I spoke about both a year later at AHRQ’s meeting of grantees and contractors http://www.epatientdave.com/videos/#AHRQ … and this is just one reason why the blocking of health information flow by private business interests (reported by HHS to Congress in April) is so reprehensible! This isn’t any ordinary industry here — this is private business interests (vendors and care providers) actively interfering with the progress of patients’ care! http://www.healthit.gov/buzz-blog/from-the-onc-desk/health-information-blocking-undermines-interoperability-delivery-reform/

If you haven’t followed the progression of the whole “gimme my damn / DaM data” story (including rock video by Ross Martin MD and his garage band), it’s here http://dave.pt/datasongstory … the most recent development (so new it came after your post here) is the demand for health data spigots to stream our health data to us. http://dave.pt/healthspigot

So, yeah — hell yeah! Who out there wants to present an argument why families should be kept apart from their people’s health data? There are technical challenges, but these are smart people or they wouldn’t be in medicine. (Right?) Is there any ethical or moral argument for no spigots?

Written by

International patient engagement advocate, speaker, author of Let Patients Help: A Patient Engagement Handbook, blogger

e-Patient Dave deBronkart

Written by

International patient engagement advocate, speaker, author of Let Patients Help: A Patient Engagement Handbook, blogger

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