By ADRIAN GROPPER, MD

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.

Here’s why PMI policy will impact all of healthcare: PMI wants data from all of our healthcare providers but they can’t just take it without asking us the way everyone else in healthcare does. This was the focus of a high level meeting at HIMSS led by former US CTO Aneesh Chopra and attended by the leading EHR vendors and luminary hospital networks. The headliners at the meeting were Karen DeSalvo and the administration’s chief data scientist, D.J Patil. They were all there to encourage the EHR vendors and hospital networks to allow patient-directed sharing of health records in order to enable the PMI. Once this is in place, patients will gain more control over our own health data, but how much control? Will we get control of our data without delay, without blocking of any destination, and without having to file paper forms?

Lacking a public announcement to that effect, and based on a decade of experience, we have to assume the answer is No. What is likely to happen is that the PMI database will be treated as yet another special case of a “trusted” destination. This is the same strategy that allows DirectTrust to block patient-specified secure email. PMI says we will have access to our own data and we can safely assume the same policy applies to our data in Medicare. This is why this summer’s Medicare Blue Button on FHIR project is a clear test of the Administration’s and private healthcare’s Interoperability Pledge to eliminate data blocking.

Our Federal Government’s approach to data blocking will be tested this summer in the relatively simple context of our Medicare claims data. If Blue Button on FHIR blocks immediate access to any patient-specified destination then we can expect that the much more sensitive data in the PMI will also block such access. In addition, this would sanction an interpretation of HIPAA and the Interoperability Pledge by our health services providers that allows them to block patient-directed access as well. The Health Relationship Trust (HEART)working group is working in parallel with the FHIR standards group to demonstrate how existing standards can support unblocked patient-directed health information exchange. Although ONC co-chairs the HEART workgroup, as of today, not a single Federal Health Architecture program has committed to sponsoring or deploying our work. Unless this changes, the patient-voluntary Precision Medicine Initiative is at risk and Obama’s legacy of $30 B of HITECH incentives will be data blocking until Congress steps in to fix HIPAA.