Kathryn Marchesini, a lawyer working under ONC's Chief Privacy Officer Joy Pritts, served as point person on the pilot project that involved three medical group practices, a hospital, some contractors and the Western New York Health Information Exchange. Marchesini gave a project update at the monthly Health Information Technology Policy Committee meeting Tuesday.
I obtained a copy of the survey questionnaire from the ONC. The government asked patients many of the right questions, and in the right way, but the data generated from that survey has not been released. It should be, as soon as possible.
The questions were structured to measure the intensity of patient concern. There were few surprises, based on a description of the results by Marchesini.
Patients' chief fears, she said, were about insurance companies peering at their full clinical records, whether particularly sensitive information, such as their HIV status, will be swapped along with their regular medical records, and whether they can opt out once they've opted in.
Early in her presentation, Marchesini said, “Informed patient choice is one way to ensure a trust relationship between patients and providers for the success of electronic health information exchange.” I agree.
HIT Policy Committee member Deven McGraw, who co-chairs its Privacy and Security subcommittee, called its “tiger team,” asked some excellent questions.
“Are you guys evaluating at all how the providers participating in these pilots are responding to the choices executed by the patients, whether in fact they're being honored?” McGraw said. “Because one of the things I periodically hear from folks about is, I gave a consent for my information to be shared and yet it wasn't, or, I didn't give a consent and it was. Making sure the back-end implementation is working as well as the front end gathering up the consent in the first place would be interesting to know?”
Marchesini said they hadn't asked those questions, but agreed it would be good to do so on follow up.
A geeky addendum to McGraw's question should be, “How many of the four providers in the pilot were able to integrate the open source software that took patients' consent directives from the laptops and effectively incorporated them in the providers' EHRs and workflows?”
The Veterans Affairs Department has been plowing this field for a couple of years now, working with Kaiser Permanente, the Social Security Administration, the Defense Department's Military Health System and the Substance Abuse and Mental Health Services Administration at HHS, and has developed its own, fairly sophisticated consent management tool. It sits as an interface layer between a provider's EHR and another provider or a health information exchange.
It will be interesting to see if the ONC software is a better mouse trap.