The health information exchange is an exciting new patient safety and efficiency innovation that has the potential to save both money and lives by moving medical records from paper to electronic.  But it carries great responsibilities and risks. It may seem odd for a Board member of Connecticut’s health information exchange to say, but I don’t trust the exchange enough to participate.

This long overdue innovation would allow the various health care providers treating ready access to medications and treatments prescribed by all patient providers, preventing dangerous drug interactions. With a functioning and secure exchange a doctor treating someone in an emergency will know patient allergies, past surgeries, lab results and X-rays immediately   even if the patient isn’t able to communicate. Patients won’t have to remember all the details of their medical history and repeat it to every treating provider.

However, earlier this month Connecticut’s   Health Information Technology Exchange of Connecticut (HITE-CT)  Board, charged in state law with developing a health information exchange for Connecticut, made an unwise policy decision – to adopt an opt-out privacy policy. What that means is all patient information will be included in the exchange, available to any user without the patient’s consent or knowledge,  unless an individual notifies the board that they don’t want to participate. And they aren’t going to make that easy.

An opt-out policy also creates additional privacy issues. Under state and federal law particularly sensitive types of information, such as HIV and mental health, require affirmative patient consent to share.  In the HITE-CT proposed system, doctors and hospitals would have to identify and separate out any reference to a sensitive condition or its treatment in every record they include in the system – and would have to accept the liability for any mistakes.

As a result, doctors accessing a medical record to treat us might not know if they are seeing the full record or if important medications or treatments are missing.

Every neighboring state that has established a health information exchange has done so with an opt-in policy that respects consumer rights by requiring patient consent before information is shared. By all accounts, the system has worked well, with between 86 and 97 percent of consumers agreeing to sign up.

Busy practices and hospitals in our surrounding states are successfully collecting consent from their patients without shutting down the health care system. So successful are these programs that three states – Colorado, Utah and Vermont – that had started with opt-out programs have now converted their exchanges to opt-in.

The worst part of the default, opt-out proposal is the message it sends to consumers in direct contradiction to emerging best practices in that empower patients to take responsibility for by actively participating in health decision making.

HITE-CT’s proposal would take control of our most private health care information away from patients.
The good news is there is a proposed bill (SB 1147), stuck in the Public Health Commitee, that would force the HITE-CT Board to do the right thing and adopt an opt-in privacy policy.

But if it doesn’t pass, reluctantly, I will be choosing not to participate in the exchange. If the HITE-CT Board doesn’t trust me as a consumer to make the right decision with my most private health information, why would I trust them with it?

Ellen Andrews is executive director of the CT Health Policy Project.

Ellen Andrews, Ph.D., is the executive director of the CT Health Policy Project. Follow her on Twitter@CTHealthNotes.

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