The Depressing State of HIEs

See the full article at Hospital EMR and EHR: The Depressing State of HIEs

Yes, the state of Health Information Exchanges (HIEs) in the US is depressing, because many don’t work well for patients or doctors. They enable hundreds or thousands of strangers who work for hospitals, insurers, health IT companies, etc to exchange, use, or sell our sensitive medical records without our consent.

The safe way to exchange health information is to use secure email and patient consent, this is called the “Direct Project”. See: http://directproject.org/ . It enables us to share our health information between two health professionals and email physicians. The Direct Project enables “participants to send authenticated, encrypted health information directly to known, trusted recipients over the Internet.”

Patient Privacy Rights (PPR) endorses the “Direct Project” as the ONLY legal, ethical, and secure way for sensitive patient information to be exchanged.  The public will not trust HIEs or national data exchange models unless patients control the disclosures of their sensitive health records.

A quote from the story below shows financial interests of Accountable Care Organizations (ACOs) can trump patients’ interests: “Some ACO providers are now blocking access to their data so competitors can’t get to it”—-that means doctors who are not part of the ACO but who treat ACO patients can’t see their test results and treatment records–even when these patients want them to have that information.

Some ACOs and other businesses view HIEs as vehicles to get more patient data, rather than as a means to serve patients’ needs for care coordination, to avoid duplicate tests, to ensure better treatment, or enable them to give consent for research use of their data.

Many corporations and businesses that HOLD patient data imagine they own it, so they use and sell it without patient consent. US law and medical ethics still require meaningful, informed patient consent before physicians or data holders can disclose anyone’s health information. “HIPAA compliance” actually does NOT get data holders off the hook for asking patients for consent before disclosing data. According to the HIPAA Privacy Rule, it’s “the floor” for data privacy protection, not the ceiling. 67 Fed. Reg. at 53,212 (August 14, 2002).  HIEs designed to further business interests over patients’ interests will continue to fail, because the public will not support them.

It turns out that the only person who can easily, cheaply, and legally make patient data flow for all the right reasons (treatment, research), to all the right all the people (a specific doctor or researcher) at the right time is YOU.

Only you can tell an ACO to send your data to an outside clinician —- and the ACO must send it, whether it gives competitors an advantage or not. Only you can make your data “fluid”, because patients are the only people with clear, longstanding Constitutional, legal, and ethical rights to disclose personal health information.

In PPR’s recent comments about building a Nationwide Health Information Network (NwHIN), we urged the Office of the National Coordinator for Health IT (ONC) to address the fatal privacy and security flaws in current systems and state and federal data exchanges. We urged ONC to certify that HIEs and data exchanges protect privacy by verifying that only patients decide when/where personal data flows.  “Multi-stakeholder” public-private governance at the state and federal level has failed to gain public trust.  Public-private governance assures that industry, research, and government interests trump the public’s rights to health information privacy. See: http://tiny.cc/e1v0gw for more information.

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