Electronic health records open patient privacy questions

A federal advisory panel today heard several proposals about how to best protect patient privacy while creating and sharing electronic health records (EHRs).

The Health Information Technology Policy Committee convened to prepare recommendations to the Health and Human Services Department on distributing $19 billion in economic stimulus funding for incentive payments for EHRs and health information exchanges. The bulk of the money will go to doctors and hospitals that buy certified record systems and participate in the exchanges. HHS is expected to issue a rule by year’s end.

Dr. Deborah Peel, founder of the Coalition for Patient Privacy, said the core of privacy is patient control of the information in EHRs.

“The right to privacy and control is the national consensus,” Peel said, “It reflects centuries of medical ethics. We are asking you to set a high bar for privacy to meet with patients’ expectations.”

She suggested patients should be allowed to consent, or not consent, to each disclosure of the information, and for the information to be segmented to maintain different levels of disclosure for different pieces of information. Industry does not want to change its practices, so it is best if regulations are created to enforce patient consent management rules, she added.

However, patient consent, by itself, has not proven to be effective tool, asserted Deven McGraw, a member of the advisory panel and director of the health privacy project at the Center for Democracy and Technology.

“Although the concept of patient control is very appealing, consent does not work the way we want it to,” McGraw said. “Consent does not provide protection.”

That is because health insurers often require blanket consent forms in which patients authorize a very broad variety of uses and disclosures that are not well understood by patient, she said. Patients don't really have a choice, because if they don't sign the consent form, the insurer will deny coverage, McGraw said.

The solution is to include patient consent in a comprehensive framework of technical and legal standards for IT systems, networks, practices and training, along with other features, she said.

The committee also heard discussions about the use, disclosure, secondary use and stewardship of the personal health data. It also is considering audits and accountability for the EHR systems and models for data exchange, data storage, data de-identification and re-identification.

In July, a separate advisory committee to HHS, the Health IT Standards Committee, considered specific recommendations for patient privacy that included encryption, strong access controls and audits.