ACTION ALERT! U.S. Government Plans National Medical Records Information System

Public Comment Deadline: Monday, January 18, 2005, at 5 p.m. EST

The federal government is putting together a plan for digitizing (computerizing) every patient's medical record - a new national health information network (NHIN).

The purpose: to more easily disclose, share, and disseminate your private medical record data as now permitted by the federal "medical privacy" rule.

The U.S. Department of Health and Human Services (HHS) wants to hear from you.

Calling the NHIN a "new vision for health care through the use of information technology," the goal of NHIN are:

1. Inform clinical practice with use of electronic health records (EHRs).
2. Interconnect clinicians so that they can exchange health information using advanced and secure electronic communication.
3. Personalize care with consumer-based health records and better information for consumers.
4. Improve public health through advanced biosurveillance methods and streamlined collection of data for quality measurement and research.

Notice goal number 4.

As planned, the national medical record system would include:
- Government health surveillance (perhaps diseases, diagnoses,immunizations, genetics, medications, injuries....).
- Government collection of data or direct access to data on physician treatment decisions and patient health status.
- Medical research.

There is no mention of patient consent requirements.

ACTION OPPORTUNITY

This request for comments is an opportunity for you to protect the details of your medical and personal lives from becoming public property, and your data from being used to create legislative proposals, laws or other policy that may not be in your best interest (eg. "best practices" requirements, which may enable or include rationing of health care).

For those concerned about medical privacy, personal freedom, physician autonomy, and medical innovation, comments to HHS could include:

• No national health data system, or requirements for interconnected interoperable statewide health data systems.
• No federally-issued patient identification and tracking number (part of 1996 federal law, but not yet implemented).
• Require that patient consent be restored to patients (see next paragraph).

The federal "no-medical privacy" rule (HIPAA - Health Insurance Portability and Accountability Act of 1996) does not protect patient privacy. In fact, patients may not prohibit most access to their medical records, as is clear from "Notice of Privacy Practices" received by patients in clinics and hospitals across the country. With few exceptions, health plans, doctors and hospitals can disclose, transmit, disseminate and share patient data without the knowledge or permission of patients.

A national electronic medical records system without real and informed patient consent requirements that allow patients to pick and choose who gets what information, when, for what purposes, and for how long will only enhance disclosure and dissemination activities.

SEND PUBLIC COMMENTS TO:
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EMAIL: NHINRFI@hhs.gov
Include "NHIN RFI Responses" in the subject line.

U.S. POST:
Office of the Nat'l Coordinator Health Information Technology
U.S. Department of Health and Human Services
Attn: NHIN RFI Responses,
Hubert H. Humphrey Building, Room 517D
200 Independence Avenue, SW
Washington, DC 20201.
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FEDERAL REGISTER NOTICE: http://www.gpoaccess.gov/fr/index.html
(dated Monday, November 15)
Title: National Coordinator for Health Information Technology; Development and Adoption of a National Health Information Network