EHR Data: Privacy vs. Publicacy
Lately, there’s a whole buncha buzz about on this digital healthcare data ownership versus sharing stuff. You know the issue of which I speak: Dr. Deborah Peel, et al, reminding us that the road to healthcare data integration is strewn with personal privacy landmines galore, and then, the NHINers and other data gatherers, like Jonathan Bush’s athenahealth with their recent touting of “athenaCommunity” as one arm of their mission “to make healthcare work as it should.”
This is a tough one, no matter which knife you use to slice it. On the one hand, Dr. Peel is correct that healthcare data once released to the digital winds is “like a sex tape that lives on in perpetuity in cyberspace.” People, especially us rootin’ tootin’ ‘Mericans want our personal privacy protected at virtually any cost. I don’t think any of us want our personal health histories “Paris-ized.” (Although, Ms. Hilton seems to have parlayed her randy exposure into a personal triumph. Regardless, I doubt that’ll work for any of us if our hemorrhoidal or high colonic histories get similarly YouTubed.)
J. Bush is also on the mark, though. Our personal healthcare information needs to be shared in order to be of value. Gone are the days when you have one doctor who spanks your butt when you’re born and follows you through “till death do you part.” We move, change providers, have multiple providers, use Minute Clinics and ERs — i.e., we roam. It is impossible to fathom our healthcare histories making it in timely fashion to the many destinations we do in any version of the old, tattered, paper chart. (Lord, just try to get a faxed report from another provider during the fifteen minutes you have a patient in your office!)
If we didn’t have such cultural issues as racism, ageism, sexism, and “sicko-ism,” maybe we wouldn’t care who sees our psychological or proctological profiles. If we had fully socialized medicine or if we had complete private pay healthcare sans insurance companies, maybe it wouldn’t matter who got what gross genital germ or mental misfire malady. If you get sick, either we all pay (socialized) or you do (tough break, buddy…them’s the cards you’re dealt.)
But, we live here in the land of the free and the home of the individual. We hold our privacy sacrosanct (unless we want to see what Paris has been up to and then the paparazzi have full sway.) We hold many of our prejudices, and the fears we have about others’ bigotry, nearly as holy. Yet, we also live in the land of the insurers/CMS and the home of McDonald’s medicine. We want our healthcare delivered on demand — done right without needless repetition or avoidable error and with minimal co-pays.
I was asked to write about this issue by a friend who’s a muckety-muck at a big EHR vendor. I was really hoping I could give him some unique, big toot piece. I’ve thought and thought about it and the wow-ness I’d hoped for seems less like a grand toot and more like an SBD. The eventual solutions for healthcare data privacy versus “publicacy” will be hard-fought and counter-punched for years.
This I know: I have met both Deborah Peel and Jonathan Bush. I’ve listened to each speak on multiple occasions. I like them both and think both are brilliant. I also think both are intimately and ultimately concerned about doing what’s best for patients, providers, and all of healthcare. In this very sticky wicket of personal privacy versus grand communal good, I’m very glad to see both are engaged in this battle, guarding opposite flanks of our healthcare ranks. Our vanguard is well-manned (-womaned.)
From the trenches…
“When it comes to privacy and accountability, people always demand the former for themselves and the latter for everyone else.” – David Brin
Dr. Gregg Alexander, a grunt in the trenches pediatrician, directs the “Pediatric Office of the Future” exhibit for the American Academy of Pediatrics and is a member of the Professional Advisory Council for ModernMedicine.com. More of his blather…er, writings…can be found at his blog, practice web site or directly from firstname.lastname@example.org.