Groups Join Forces For Medical Privacy

Congress is trying to look toward the future and become more technology minded by building a national electronic health system. A group of 26 national groups however are asking that at the middle of any such system they add a patients privacy rights to protect patients.

“Patients own their health data and should control who has access to their personal health records. Privacy violations will exponentially increase if patients cannot limit which health care businesses and government agencies can access our personal health data over an electronic network,” said Deborah C. Peel, MD who is chairman for the Patient Privacy Rights Foundation (PPRF).

Tim Sparapani, Legislative Counsel of American Civil Liberties Union has also said, “The intentions of the proposed health information technology legislation are to improve healthcare, reduce medical errors, and save money, but we believe that those benefits will be realized only if there are ironclad privacy protections. Guaranteeing privacy will generate public acceptance, trust and participation in these networks.

Critics fear that if people are forced to reveal their medical records over electronic networks that they will be less than honest about embarrassing symptoms,  avoid getting treated and even leave out important medical problems.

The 20 nationally recognized organizations are urging Congress to:

•    Restore the patient’s right of consent
•    Give patients the right to opt-out of having their records in any national or regional electronic health system
•    Give patients the right to segregate their most sensitive medical records
•    Require audit trails of all disclosures
•    Deny employers access to medical records
•    Require that patients be notified of all suspected or actual privacy breaches
•    Preserve stronger privacy protections in state laws
•    Enact meaningful enforcement and penalties for privacy violators

The organizations making up the coalition are the following:

American Civil Liberties Union
American Conservative Union
Asian American Justice Center
California Consumer Health Care Council
Christian Coalition of America
Common Cause
Computer Professionals for Social Responsibility
Consumer Action
Electronic Privacy Information Center
Fairfax County Privacy Council
Family Research Council
Free Congress Foundation
National Asian Pacific American Families Against Substance Abuse
National Center for Transgender Equality
National Health Law Program
Patient Privacy Rights Foundation
Population Research Institute
Privacy Activism
Privacy Rights Now
Privacy Rights Clearinghouse
Republican Liberty Caucus
Thoughtful House Center for Autism
U.S. Bill of Rights Foundation
U.S. Public Interest Research Group
U.S. Public Policy Committee for the Association for Computing Machinery

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