ACT NOW - Stop Congress From Ending Medical Privacy!

The U.S. House Energy and Commerce (E&C) Committee will vote the week of May 18, 2015 on the 21st Century Cures Act. If passed, it will go to the floor of the U.S. House for vote and passage. The bills authors are U.S. Reps. Fred Upton (R-MI), Diana DeGette (D-CO), Joe Pitts (R-PA), Frank Pallone (D-NJ) and Gene Green (D-TX).

The Cures Act (Subtitle G, section 1124) would authorize millions of corporate and government outsiders to have access to private patient records without patient consent. The bill defines research using private health data (e.g. medical, medication, behavioral, genetic, mental health) as “public health activities” and “health care operations.”

Under these definitions, no patient consent is required for access, per the federal HIPAA “no privacy” rule. Thus, hospitals, doctors, clinics, health plans, and data clearinghouses (defined as "covered entities” in HIPAA) as well as 1.5 million business associates engaged in “health care operations,” plus all government agencies engaged in “public health activities” would be given access to medical records without patient consent. NOTE: the definition of “health care operations” is 390 words long.

The Cures Act will give Obamacare a boost. The Obamacare research institute (PCORI) and other ACA-established entities will be empowered to use patient, doctor and treatment data to implement Obamacare’s controls over the practice of medicine.

To make it easy to access all our data, Section 3001 (Interoperability) would require electronic health record (EHR) companies to allow the “secure transfer of the entirety of a patient’s data from any and all” EHRs for “authorized use.” It would also require “Complete Access to Health Data” by requiring the EHR to “allow access to the entirety of a patient’s data” for authorized use. EHR vendors that do not comply will be penalized startin in 2018. Under this bill, "authorized use" would include researcher access to health data without patient consent.

The American Hospital Association concurs with our concerns telling Politico Pro that the data-sharing provision "is too broadly encompassing in allowing access to patient data for undefined research purposes; this undermines the trusted relationship between providers and their patients.”

Contact as many members of the E&C Committee as you can. 

Their phone numbers follow.

Ask for two things: 1) Section 1124 to be deleted so private medical records are not open for millions of outsiders to analyze and conduct research without patient consent, and 2) to enact written informed patient consent requirements for transferring and accessing data in our medical records (including for health care operations and public health activities) before they require EHRs to transfer and allow access to "the entirety of a patient's data."

A Section-by-Section Summary of the bill is attached. Click on "View pdf" below.

view pdf