Frustrating eHealth privacy meeting

Today’s meeting of the CT Health Information Technology and Exchange Advisory Committee’s Legal and Policy Subcommittee was frustrating. I was asked to come to discuss the concerns I raised in testimony at their public hearing June 23rd about an opt-out privacy policy for health IT exchange in CT. The committee members at the meeting included six or seven lawyers, some from private firms, and at least six state agency bureaucrats from DPH and DSS. They are recommending that every patient be defaulted into the health IT system unless they figure out how to opt-out. They are also requiring providers – hospitals and doctor’s offices – to edit out any legally sensitive information (i.e. HIV status, substance abuse or mental health treatment) that is protected by law. Busy providers have to assume the liability and labor involved in editing every record.

I am still not sure why I was there, because they have already made up their minds. In fact, they had already made their decision and forwarded their recommendation onto the powers that be before they ever held the public forum. If you didn’t hear about the forum, you weren’t alone. (Click here and scroll way down to find the forum notice.) They intend to continue this public input process by holding a series of public hearings in the fall, but after the final report has already been sent to the feds so any consumer input is irrelevant. (I know it doesn’t make sense but they have deadlines to meet.)

They all agree that a strong public education campaign is necessary to ensure that patients fully understand their rights and the benefits of having their information in the system, including reductions in medical errors, unnecessary duplicate testing, and reducing the costs of health care. When explained well, most people see the benefits of having all their providers know all their medications, surgeries, and allergies without having to remember them. It really isn’t necessary to default people into a health IT system and an opt-out policy doesn’t build trust. However, their weak public process for collecting input into the policy doesn’t inspire confidence in their capacity to conduct an effective public education campaign.

I left not sure why I was invited.
Ellen Andrews