A Western New York based program has begun testing whether patients can “meaningfully consent” to exchange of their medical data after going over a tablet-based application.
The pilot, which begins in September, will measure whether patients truly understand how their information will be shared. It’s being tested at a hospital and three clinics which already participate in the HEALTHeLINK HIE. If the project, (which uses technology from APP Design) turns out well, the app will be made available as open-source software.
How does it work? Well, in essence, patients are handed a tablet in the waiting room, work through an app allowing them to consent to as little or much sharing as they wish through the HIE, and along the way, learn enough to find out whether they’re well advised to do such sharing.
Patients will have the chance to do everything from share everything all the time, forbid all data exchanges, prevent certain organizations from seeing the data and allowing exchange only in emergencies.
By the way, the pilot tickles ONCHIT, which likes the idea of patients getting a better grip on what they’re consenting to when they agree to data exchange between providers.
I think it will take many more form factors and approaches before we’ve got this concept just right, but I’m with the ONC that this is a good issue to take on. After all, if we’re honest, many of us would have to admit that we’re just waiting for the first lawsuit in which a patient is upset cause data went to that doc in addition to this hospital.
Regardless, it’s more than time that someone take on this issue. The issue of multi-layered patient data sharing over HIEs is a ticking time bomb otherwise.