Contentious debate over how patients can opt out of data sharing nearly derailed the Department of Health and Human Services group's recommendations.

Anthony Guerra, Contributor

August 20, 2010

3 Min Read




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Devan McGraw and Paul Egerman, chair and co-chair, respectively, of the Department of Health and Human Services' Health IT Policy Committee's privacy and security team, entered the full committee's August meeting looking for approval of the letter and recommendations they put together over the summer. And while they got that approval in the end, it was only after more than 30 minutes of contentious debate, led on the other side by Neal Calman, MD, president and CEO of the Institute for Family Health.

The debate broke down as follows: among other things, the recommendations stated that if a provider uses a health information exchange (HIE) to share data that meets meaningful use requirements, the provider must also offer patients a choice of opting out of that exchange. As an alternative, the provider would be required to offer direct point-to-point exchange with any other parties needing to receive that patient's data.

Calman said repeatedly this would constitute an undue burden on providers and that they should be able to inform patients of how their practice shares data -- perhaps through an HIE -- and then leave the decision of whether or not to patronize that practice with the patient.

"So you are saying I can opt out of using any exchanges, but I can't say to a patient, 'This is the way we do business and, if you don't like it, you have to go elsewhere'? I can do that for every other aspect of my practice -- the way we deal with emergency calls, my hours, whether I use nurse practicioners -- but if someone wants to opt out of my data exchange program, I have to offer them another alternative?" asked Calman.

McGraw, director of the Center for Democracy & Technology, Egerman, software entrepreneur, and Christine Bechtel, VP of the National Partnership for Women & Families, gave spirited defenses of the recommendations. Eventually, the debate became mired down in the minutiae of terms like health information organization (HIO) and organized health care arrangement (OHCA), with each side questioning and stipulating what those terms meant and how each was treated under both the law and meaningful use. Terms like "business associate agreement" and "covered entity" were also discussed, debated and parsed.

The conversation even touched on the idea that the governance composition of an HIE might place it under different legal requirements for sharing information. For example, if providers participate in an HIE composed only of other providers, they would need less additional consent from patients for participation, but if the governance included non-providers or non-covered entities, other consent "triggers" could be tripped.

Though Calman, Judy Faulkner (CEO, Epic), Michael Klag (Johns Hopkins University, Bloomberg School of Public Health), and Marc Probst (CIO, InterMountain Healthcare) all expressed concerns during the debate, none voted no or abstained. Thus, the recommendations passed with the full, though seemingly lukewarm, approval of the full committee.

Anthony Guerra is the founder and editor of healthsystemCIO.com, a site dedicated to serving the strategic information needs of healthcare CIOs. He can be reached at [email protected].

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