2-part story on “Julie” who spoke at the 2nd International Summit on the Future of Health Privacy

See the stories written by Joe Conn at ModernHealthcare.com: ‘Julie’ learns that privacy is more illusion than reality & How ‘Julie’ got a big surprise about medical records privacy

These stories matter for many reasons, not the least of which is that Partners is switching to Epic EHRs and Epic’s CEO has openly opposed data segmentation for years. She claims it’s impossible, too expensive, can’t be done, etc. Partners is about to spend hundreds of millions of dollars on a failed electronic health records system.

The claim that data segmentation cannot be done is incorrect. One example is the open source consent technologies used for over 12 years by many state mental health departments to exchange sensitive mental health and substance abuse data on over 4 million people in over 8 states (the states belong to the NDIIC). Further, the state of MA has very strong laws that require consent for the disclosure of mental health information (actually all 50 states do too).

Why would Partners’ choose a product that fails to protect patient privacy in a such a major way? This will prevent trust in doctors, hospitals, and worst—in ALL electronic systems. Millions of patients/year refuse to seek treatment when they know they cannot control where their data flows. Any HIE or EHR that cannot selectively share data with the patient’s meaningful consent, withhold data without consent, AND withhold erroneous data is a failed system or technology. The refusal of certain health IT companies to build technologies that comply with the law and what patients expect shows very poor judgment.

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