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Privacy and genes

Two eminent physician information technology leaders engaged in a colloquy Sunday on the secondary use of patient data and privacy at the physician IT symposium Sunday at the Health Information and Management Systems Society convention in Orlando, Fla.

In the audience in a room packed with 400 fellow physicians was Dr. John Mattison, chief medical information officer and assistant medical director of the Southern California Permanente Medical Group.

On stage at the podium was Dr. Christopher Chute, a professor of medical informatics in the division of Biomedical Statistics and Informatics in the Department of Health Sciences Research at the Mayo Clinic. Chute is a member of the federally chartered Health IT Standards Committee. Mattison is a member of the Health IT Policy Committee's workgroup on governance of a nationwide health information exchange.

Chute had just completed his talk on innovative uses of electronic health-record systems and wringing value out of the patient data they capture. In it, Chute had discussed various projects involving the secondary use of patient data for research, adding that many “innovative uses of EMR data are imminent.”

“I actually believe that the value of the electronic health record has started to shift,” Chute said. “The value to society is greater than it is for the patient.”

Mattison didn't argue the point, but merely added there will be consequences that can no longer be ignored. Perhaps as soon as five years hence, a physician will find it difficult to defend the quality of his or her care of a specific patient without using a computerized, clinical decision support system that performs metadata analysis “based on the genomic signature” of the patient, he said.

“My concern is, there is no way to take clinically meaningful data sets and isolate them,” from that patient's identifiable genetic information. In other words, “How do you possibly think about de-identifying data in the age of genomics when the virtual integrity of the data is dependent on (their) genomic signature?”

“You're absolutely correct,” Chute said. “It's like fingerprinting. The whole notion of de-identifiable data, you're quite correct, is fallacious.”

“Today, the number of genetic signatures that are clinically urgent are very few,” Mattison added. But that's going to change at an accelerated pace.

In 1998, bowing to political pressure from privacy advocates, then-Vice President Al Gore, with Congress close behind, barred federal funding for development of a national patient identifier. But it seems God has already equipped every one of His children with the ultimate patient identifier.

Mattison said in a conversation after the meeting, his point was not to argue against medical research and the secondary use of patient data. Quite the contrary, he said. He's an advocate of both. But he just wants everyone to be upfront about it. Chute said much the same thing after his presentation.

“The discussion with the consumer advocate community has not been had,” Mattison said. “I'm just advocating for a more open and candid dialogue on just what the risks are.”



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