Johnson's bill enjoyed broad health IT industry support. I was in Washington in mid-2006 for a Healthcare Information and Management Systems Society-sponsored IT summit that dispatched more than 400 IT users to lobby their legislators for it. The bill included a HIPAA amendment to pre-empt state consent laws.
But pre-emption was stripped out by the House Energy and Commerce Committee, chaired by Rep. Joe Barton (R-Texas). Johnson's bill, and her political career, soon died.
Undeterred, RTI and the NGA pushed on with dozens of state committees, including one in Colorado. Each was presented with an RTI-delivered framework that presumed state patient consent laws were "barriers" to health information exchange and that tilted toward removing—not accommodating—them.
To be sure, improving health information exchange is a worthy goal, and the CORHIO folks, citing the opinions of its focus group members, listed the many advantages of adding behavioral health records to HIEs. The same benefits are so often cited by proponents of records exchange that they don't need repeating here.
Nowhere in the CORHIO report, however, was an examination of the benefits derived from a state law that required patients' consent before their information was disclosed or placed—forever beyond their control—in an exchange.
Maybe those benefits were so obvious the CORHIO folks figured they didn't need repeating, but I'm going to do it anyway.
Providing safe, high-quality, high-value healthcare services requires patient consent. For patients who have conditions that could stigmatize them, cost them a relationship or a job or prevent them from obtaining affordable health insurance if their medical records were not kept private, the right of consent is akin to the right of social and economic survival. Without security and control, patients will lie or withhold information even more than they do now, which is often.
In 2009, Congress stuck its nose under the tent of patient consent in the American Recovery and Reinvestment Act. It added a provision that obliges HIPAA-covered entities to honor a patient's request to not disclose records of a visit or treatment if it's paid for out of pocket.
A proposed rule by HHS putting flesh to that provision is due out any day now.
We'll see how HHS does at backtracking on consent.
Follow Joseph Conn on Twitter: @MHJConn.