One CIO's case for making medical records available online

Image removed.Anyone who wants to sift through the medical records of John Halamka can--the Beth Israel Deaconess Medical Center CIO's information can all be found online as part of the Personal Genome Project.

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Halamka voluntarily made his full medical record and genome available, as well as that of many of his family members.

"Have I lost stature in the community because of my genetic risks, my treatment for glaucoma, or my occasional episodes of supra ventricular tachycardia? Have I been denied insurance, lost employment, or experienced tension among family/friends?" he writes in a commentary at Politico.

"So far, I haven't experienced any adverse consequences."

Halamka says the decision is a "relief" for him and his family members. They don't have to worry about their data being hacked, and they don't have to worry about interoperability issues when switching providers.

He adds that the practice may soon become more common. Millennials are used to sharing details of their lives on sites like Facebook, so "is openly sharing immunizations, allergies and physician orders for life-sustaining treatment any more controversial?" he writes.

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For this to happen, Halamka says there needs to be a national health identifier to bring health data from different sources together, and patients need to be able to choose how much or how little data they want to share.

However, getting to the point where a bulk of patients feel comfortable having this information publicly available could take time.

A provider's use of an electronic health record can cause a patient to clam up for fear that the data won't be secure, according to a 2014 study in the Journal of the American Medical Informatics Association.

The researchers, from the University of Wisconsin-Milwaukee and Dartmouth College, found that 13 percent of respondents reported having withheld information from their provider because of privacy and security concerns.

To learn more:
- read the Politico post