Privacy Activism

Medical Privacy

 Comments on National Health Information Network – Request for Information 

PrivacyActivism and Privacy Rights Clearinghouse (descriptions of our nonprofit consumer advocacy organizations are provided at the end of these comments) welcome the opportunity to comment on the proposed establishment of a National Health Information Network (NHIN) and the development of electronic health records (EHRs) that will comprise that system. Our comments are in response to the Request for Information (RFI) published by the Department of Health and Human Services (the Department and HHS) in the Federal Register on November 15, 2004. The NHIN is expected to become operative over the next 10 years, implementing the executive order to create such a system that was signed by President Bush on April 27, 2004.



The proposed National Health Information Network embodies a presidential mandate to bring information technology to healthcare by making complete patient records available to providers, regardless of location. In theory, this is a good idea; for example, it could take the guess work out of an emergency room scenario with an unconscious or incoherent patient (assuming the person’s identity can be established and that he has a record in the system).


In practice, a uniform healthcare information network raises many questions, not least of which is whether it is technologically feasible. We feel most emphatically that all stakeholders must have a role in debating the entire system and its implications for healthcare and privacy of medical records. In particular, it would be a mistake to allow decisions about the NHIN and EHRs to be driven primarily by the vendors who stand to profit from providing the software and hardware components.


In responding to the questions asked in the RFI, we will discuss matters of privacy and security, and also whether standardization of healthcare information may ultimately be detrimental to patient treatment.