There’s no reason why you shouldn’t own your own health care record. When you go to the hospital, they act like it’s there’s and all you can get are fragments of it in paper form. But now there’s movement afoot that will allow you to create your own personal health care records that can be used by health care service providers. One such effort is WorldVistA, and there are others working on similar efforts.
The current world of health care is built on data exchange standards of a variety of types. It’s an alphabet soup of esoteric ways to exchange complex information. For medical devices it’s done through a standard known as DICOM, for patient tracking and payment standards known HL7, and documents know as CDA. And there are others standards and lots of custom protocols. Some uniformity within the healthcare has been forced through federal HIPAA standards.
Patients data ought to belong to the patient. It’s our personal medical history. We ought to have a reliable store of our medical information to which doctors and hospitals and other health service providers write and read from. Instead, your record is owned by the hospital system effectively. Except for a few toll gates, you cannot get at your record because it’s buried within the each hospital’s medical information system. If you move from one hospital system to another they have to recreate your medical history rather than copy it. It’s prone to errors and it’s not usually visible to you, which is an absurdity. You can get select versions of your history but not the entire thing.
The challenges of implementing patient data that you own lies more in public policy and politics, than in technology.
Tied into the control and access of you data is a configuration of players. The negative side of this configuration is described by Tom Munnecke, an innovator of large scale medical systems in use around the world, as the the ‘disease industrial complex’. The hospital, insurance, medical device, pharma sectors are all involved in this. Getting them all to coordinate requires policy intervention rather than waiting for free market to recognize there’s an issue.
Meanwhile, the opensource community is directly responding with efforts like WorldVistA.
So you want to have you own data and control it and let the health service providers connect to you. Or you want someone you trust to house this stuff that’s unaffiliated with a particular hospital.
This one is worth tracking.