Doctors Debate Giving Patients' Online Access To Health DataDoctors Debate Giving Patients' Online Access To Health Data

Should patients control their records online? The answer isn't obvious to many in health care who fear problems with security, privacy--and, perhaps secretly, the annoying questions that inevitably come from patients combing their records.

Children's Hospital Boston this summer will roll out Web access to personal health records populated with patient data from the electronic medical records and other clinical systems used by doctors and nurses, data such as clinical notes, prescription information, and vaccination records. The patient--or parent or guardian of a minor--will decide which data sources feed into his or her personal health record, giving that person more control and easing at least some privacy concerns.

If a children's hospital, which has the added legal wrinkle of dealing with minors and their parents, can go ahead with Web-based patient records, so can others. "There are guardians, custodial parents, emancipated minors"--all potential users of the system, which leads to complicated privacy concerns, says William Crawford, director of industry relations with the informatics program at the hospital.

But Bridgewater Goddard Park Medical Associates, part of a Massachusetts health data exchange starting up this summer, won't give patients online access for now. "Patients aren't ready, doctors aren't ready," says C.J. Chaput, senior director of IT for the physician group. There were too many questions about who's responsible for patient data accessed via a portal, so it's concentrating on giving doctors access.

But patient access looks sure to spread. The industry's developing a standardized health IT form--in an XML-based message format, called a Continuity of Care Document--that's likely to be the preferred vehicle for exchanging summarized clinical data, says John Halamka, CEO of the Boston data exchange effort MA-Share and CIO of Harvard Medical School and CareGroup Health System. Personal records are most effective when automatically populated by data, says Halamka, and the Continuity of Care Document offers a good base of information for that.

Jerilyn Heinold is a believer in patient access. Checking records via the patient portal of Beth Israel Deaconess Medical Center in Boston, she found a mistake--an old report that inaccurately characterized the size of a nodule on her thyroid, which could've indicated the nodule was growing and led to unnecessary tests and surgery. When she called about the discrepancy, her specialist made a nasty comment to the effect of, "This is why we don't like these sites."

Doctors will have to get used to such questions. Once data goes digital, patients will expect access to it.

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