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Will Sensitive Data Be Shared in HIEs?

March 17, 2010
by David Raths
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The Patient Protection Coalition proposes ways to amend federal confidentiality laws.

A lively debate is taking place in the field of addiction treatment over how to best balance the goal of sharing health data with the wider healthcare community with the crucial need for patient confidentiality.

In February the Patient Protection Coalition, a group of attorneys who work in the field, issued a 10-page proposal suggesting how to amend the federal confidentiality law to ease participation of substance use treatment providers in health information exchange. The proposal would allow providers to access a limited set of data, including demographics, diagnosis, medications, lab results, and identification of treatment providers.

But their proposal drew a cool response from advocacy groups concerned about the misuse of the information to discriminate against people seeking help for alcohol and other drug problems.

I learned a little about this issue as I wrote a story for the January-February issue of Addiction Professional magazine, a sister publication of Healthcare Informatics. You can read that article at:

In researching that article, I had difficulty finding any U.S. addiction treatment organizations involved in health information exchanges. Even some treatment organizations that were listed as participants by start-up HIEs refused to be interviewed about the topic.

The issue at stake is that federal confidentiality regulations drafted in the early 1970s, commonly referred to as 42 CFR Part 2, state that without written authorization from the patient, physicians cannot access patients' substance use history and current treatment regimen, except in cases of emergency, and some state guidelines are even more stringent. Getting those written authorizations each time data is accessed may prove antithetical to the way HIEs are being established.

One chemical dependency treatment provider I interviewed was excited about involvement with the local RHIO, but understood that the data would flow only one way: from the RHIO to his organization. “We want to pull down information from the RHIO, such as discharge summaries and prescription information, but we cannot upload anything because of 42 CFR Part 2,” said Carl Hatch-Feir, vice president for administration at the Loyola Recovery Foundation, one of 11 community-based treatment providers in the Rochester, N.Y., area working together on a collaboration called Recovery Net.

Just as health insurance reform depends on getting more people into the pool, the value of health information exchange is dependent on including all types of providers. Whether legislative action or regulatory changes by the Substance Abuse and Mental Health Services Administration are required, it seems that policymakers should take steps to ensure treatment providers can get involved.

You can read the Patient Protection Coalition’s proposal on the web site of Richard J. Bonnie, director of the Institute of Law, Psychiatry and Public Policy at the University of Virginia School of Law.

A good article about the proposal and the response from advocacy groups is on the web site of Join Together, a project of the Boston University School of Public Health whose mission is to support community-based efforts to advance effective alcohol and drug policy, prevention, and treatment.

I would be interested to hear if Healthcare Informatics readers have experiences or proposals that would inform this debate.