Electronic health records open patient privacy questions

Advisory panel considers privacy proposals

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.


Featured

Reader comments

Mon, Sep 21, 2009 Tim

How about denial of service attacks? What about hackers obtaining read, write, and execute privileges? The real price for such a system mind bogles me!

Sat, Sep 19, 2009 Jeremy Engdahl-Johnson Seattle, WA

Are we building a health IT Tower of Babel?

Overlooked in most of the electronic health records discussion is the potential for population-level analysis -- finding healthcare patterns and measuring quality and improvement over time. Only if systems work together via data exchanges or other data pooling can we get the most out of our EHR investment. More insights -- http://www.healthcaretownhall.com/?cat=3

Fri, Sep 18, 2009 Brian Ahier The Dalles, Oregon

Excellent analysis... you sure got this posted fast :-) I think it is absolutely critical that patients have control of their own health data. I agree with Peel that patient consent management rules need to be in place, and McGraw is correct that patient consent must be included in a comprehensive framework of technical and legal standards for IT systems. A huge issue which was touched on is de-identification of data, which is increasingly becoming a problem. Susannah Fox gave a wonderful presentation on privacy and security that is worth reviewing. I have posted the rough draft transcript and meeting materials here: http://ahier.blogspot.com/2009/09/hit-policy-committee-918.html

Please post your comments here. Comments are moderated, so they may not appear immediately after submitting. We will not post comments that we consider abusive or off-topic.

Please type the letters/numbers you see above