PATIENT PRIVACY IS GIVEN A SECOND CHANCE IN THE SENATE

The expected hotlining (rushing legislation through the Senate with minimal or no debate) did not take place on S. 1693, the WIRED FOR QUALITY HEALTH CARE ACT sponsored by Senator Edward M. Kennedy (D-MA). Right now, the Senate Health, Labor, Education and Pensions Committee is involved in negotiations with the Senate Finance Committee over WIRED. However, once those negotiations are completed, the bill could very well be hotlined.

Privacy advocates are concerned that WIRED does not include adequate patient privacy protections upfront.

WIRED would authorize the ELECTRONIC HEALTH INFORMATION NETWORK.

Senator Patrick Leahy (D-VT), who understands the need for protecting patient privacy, is working to attach parts of his more privacy friendly S. 1814, the Health Information Privacy and Security Act. That also helped to forestall the Senate’s hotlining of WIRED.

Here is one important issue: WIRED FOR HEALTH CARE QUALITY needs to ensure adequate consumer representation (not a token member) on the Public-Private Partnership that would be created to oversee the implementation of the EHIN.

As it stands, the board would not require the member concerned with privacy to be present at decisions requiring a vote as long as two-thirds of the other members are present. Moreover, the member representing consumers would always be outvoted 3-1 on privacy concerns.

The membership of the Partnership will be stacked in favor of health plans and insurance industry representatives, health IT vendors, and health insurance purchasers who have no real interest in protecting patient privacy. Patients are expected to just “trust” these groups that benefit from open access to health data to guard their privacy.

WIRED also relies heavily on the Health Insurance Portability and Accountability Act (HIPAA) to address privacy, a fatal flaw. HIPAA’s “Privacy Rule” is actually a “Disclosure Rule” that permits greater disclosure of medical information to corporate entities with a presumed medical interest — without a person’s consent and over their objections.

Curiously, just five years ago, WIRED’s main sponsor, Senator Ted Kennedy (D-MA) issued a statement criticizing the Bush Administration for their changes to the HIPAA rules:

“If we don’t take steps to protect privacy in the information age, our most personal information will be available to every employer, every health insurance company, and every high tech Peeping Tom in America. This is not only unfair to patients, it is bad for their health…The new rules…make private medical records an open book. This is a serious step backwards. Each time patients see a doctor or fill a prescription, they are at a greater risk that their most private medical information will be available to prying eyes.”

Those rules did in fact go into effect.

The lack of strict patient privacy protections and safeguards governing HIPAA means sensitive medical information could wind up in the hands of financial credit agencies and data aggregating firms. Americans with pre-existing conditions such as diabetes and those who sought treatment from mental health professionals will be placed at risk when it comes to seeking employment or financial credit.

It is easy for advocates of WIRED to say they want privacy protection. However, unless they insist that WIRED be revised to provide adequate consumer representation on the Public-Private Partnership and to have stronger privacy protection than the counterproductive HIPAA, they are just handing you a line.

Dr. Deborah Peel, Founder and Chair of Patient Privacy Rights, can keep you up to date on the debate over WIRED FOR HEALTH CARE QUALITY and its implications for patient privacy.

Contact:

Ashley Katz

Patient Privacy Rights

512-732-0033

akatz {at} patientprivacyrights(.)org

http://www.patientprivacyrights.org/

Background:

Patient Privacy Rights has assembled a list of privacy principles and safeguards that should be included in whatever legislation ends up hitting the president’s desk to establish an electronic health information network.

http://www.patientprivacyrights.org/site/PageServer?pagename=PrivacyCoalition

HIPAA: Intent v. Reality. Describes how HIPAA became a regulation that sanctions disclosure of health information.

http://www.patientprivacyrights.org/site/PageServer?pagename=HIPAA_Intent_Vs_Reality

ABOUT PATIENT PRIVACY RIGHTS AND DR. DEBORAH PEEL

MODERN HEALTHCARE ranked Dr. Deborah Peel as number four in their “100 Most Powerful People in Healthcare. Here’s what MODERN HEALTHCARE had to say about Dr. Peel:

“…Deborah Peel leaped right to the top tier. The privacy advocate made a mark by founding a grass-roots Internet-based group of 4,000 e-activists who are fiercely defending the privacy of medical records as the healthcare industry becomes more comfortable and adroit with information technology.”