President Obama’s legacy for health information technology is about to see its first test at the hands of a little-known project for access to Medicare beneficiary data. The President’s Precision Medicine Initiative (PMI) database is the big brother of Medicare’s database. Although both databases will be managed by the Government, the PMI one will also have our DNA and as many of our health records as we are willing to move there. How much control will patients have over our data in either of these databases? Federal policy on these databases will impact all of healthcare.
The test is whether either of these databases will limit one’s ability to control and use our own data.
- Can I have free first-class network access to my own data?
- Can I send my own data instantly to anywhere I choose?
- Can I direct my data digitally, without paper forms?
These three questions apply equally to my Medicare data, my data in a private-sector EHR, and my PMI data. Current HIPAA law allows it but will the Government and hospitals actually implement it? The policy for the Medicare database is being implemented as Blue Button on FHIR this summer, and so-far it doesn’t look good.
If our Federal Health Architecture (FHA) will not allow us the maximum control allowed by the law, then how can we expect private-sector healthcare systems to do it? I wrote about the current HIPAA law and how it needs to be changed to make a patient’s first-class access a right, instead of an option, in a previous post.




