Coalition for Patient Privacy Asks for Meaningful Privacy Protections in the “Wired” Act

Adding privacy later will further open up our health records to data miners and cost taxpayers millions.

Washington D.C. — As Senators Kennedy and Enzi, sponsors of the Wired for Healthcare Quality Act, S. 1693, try to push legislation through the Senate prior to the holiday recess, members of the Coalition for Patient Privacy asked that the bill go no further until privacy protections are added. Passage of the Wired Act as written will further erode Americans’ right to keep their health records private and cost the taxpayers millions. Download the Coalition’s letter here. Download an analysis of the privacy language in the Wired Act here.

While the Coalition applauds Kennedy and Enzi’s efforts to advance health information technology, it opposes the Wired Act without the addition of meaningful protections to keep the most valuable information about us, our health, private. Sen. Leahy drafted an essential amendment adding privacy protections. The Coalition urges the Wired Act’s sponsors to continue good faith discussions with Sen. Leahy and include all of the privacy protections proposed in his amendment.

If asked, surely Senators Kennedy & Enzi would confirm that Americans should have a right to control our most personal and sensitive health information. Refusal to incorporate meaningful privacy protections is puzzling and it is very troubling to see the insurance and health industry trump Americans’ right to control who can see and use our most personal secrets.

“What politician would openly take a stand against privacy?” asks Deborah Peel, MD, founder and chair of Patient Privacy Rights, a leader within the Coalition for Patient Privacy.

Sponsors of the Wired Act have argued that privacy is too complicated to include in their bill and that it can be added later. Not only is this approach bad for privacy, it moves us toward a system that will cost taxpayers millions. According to a Government Executive story just released, Congress just appropriated $20 million to fix the VA data breach, a result of failing to incorporate basic privacy protections at the outset..

“Privacy is not something than can just be fixed after the fact. When your employer finds out you have an STD or heart condition, they have that information forever. There is no magic “delete” button for health information,” said Peel.

Members of The Coalition for Patient Privacy that signed the recent letter on Wired include:

American Association of People with Disabilities http://www.aapd.org/

American Civil Liberties Union http://www.aclu.org/

American Conservative Union http://www.conservative.org/

Clinical Social Work Association http://www.cswa.org/

Consumer Action http://www.consumer-action.org/

Consumers for Health Care Choices http://www.chcchoices.org/

Fairfax County Privacy Council http://www.fairfaxcountyprivacycouncil.org/

Gun Owners of America http://www.gunowners.org/

International Center for Disability Resources on the Internet http://www.icdri.org/

Just Health http://www.justhealthnow.org/

National Coalition of Mental Health Professionals & Consumers

Pain Relief Network http://www.painreliefnetwork.org/

Patient Privacy Rights Foundation http://www.patientprivacyrights.org/

Private Citizen, Inc. http://www.privatecitizen.com/

U.S. Bill of Rights Foundation