Gimme My Damn Data, Three Years On: What's Changed and What Hasn't

Type Journal Article Author E.-patient Dave Debronkart* URL http://www.medicine20congress.com/ocs/index.php/med/med2012/article/view/1272 Publication Medicine 2.0 Conference Date 2012/03/26 Accessed 2017-12-22 23:00:47 Library Catalog www.medicine20congress.com Abstract Three years ago I clicked the button to move my patient portal data to Google Health, and what came across was garbage. As an ordinary IT user in my day job, I blogged about the implications of invalid medical records. A media firestorm resulted, and Dr. Eysenbach invited me to be the opening keynote at Medicine 2.0 2009. The title: "Gimme My Damn Data - Because You Can't Be Trusted with It." Much has happened since then: massive Federal regulations have been developed in the US for Meaningful Use, billions of dollars are being rolled out to implement EMRs and HIE, and patients / consumers are becoming newly conscious of health data issues. In this session I will review the status of our personal health data, in concept and in reality, and present a new model I've been developing of how useful information comes into existence and attracts, or is found by, the people who need it. At the center, of course, are the ultimate stakeholders: the patient and family. [] Short Title Gimme My Damn Data, Three Years On