At its monthly meeting held Wednesday, the HIT Policy Committee wrestled with patients' rights to opt in or opt out of health information exchange.

When the committee's privacy tiger team delivered a hefty package of recommendations – the first in a series of them – the group reluctantly approved them on the condition they would vote on the entire package again in September.

Paul Tang, vice-chair of the HIT Policy Committee said when it comes to opting in versus opting out of HIE, it's not likely there will be a consensus in this group in the future.

The debate comes down to whether or not patients' electronic health records, even de-identifed, should automatically be included in HIEs, with the patients opting out if they do not want to participate.

The other school of thinking says all patients' records should not be sent anywhere, unless patients choose to opt in.

"This is a challenging and contentious topic," Tang said. "Patients should not be surprised by where their records go."

Committee member Judy Faulkner from Epic Systems said it comes down to a moral and ethical decision. She recommended that policy on the issue be based on evidence, not on the "vocal minority" of privacy activists.

Gayle Harrell, former Florida state legislator was adamant. "Giving people an 'opt-out only' is not a choice."

It is a constitutional and legal right to have your health information private, Harrell said. Once it is breached, it can't be retreived and the damage can't be repaired.

"There should be a full public debate on this," she said, "beginning in state legislatures."

Neil Calman, the Institute for Family Health, was of the opposite opinion. "Opting in is not a reality," he said.

There are hundreds of thousands of patients on some medical practices' rosters, Calman said. How will they get time to sit down and help each patient make an informed decision? Doctors can't take on that burden. 

Calman said the ultimate decision could be made by a patient choosing to not see a doctor who uses electronic health records. Use of EHRs implies data exchange, he said.

Deven McGraw, chair of the tiger team and a patient privacy expert from the Center for Democracy and Technology said the group put in more than six volunteer hours a week on preparing the recommendations over the past month.

McGraw said the recommendations were based on guidelines from the Nationwide Framework for Electronic Health Information Exchange issued by the Office of the National Coordinator for Health Information Technology.