I read an article last week from Government Health IT entitled “ONC ready to test patient e-consent for health data exchange“. In summary, ONC awarded $1.24 million to develop a method by which patients can give their consent about sharing health data. Added to this contract are specifics around developing an innovative way to help patients understand their choices around the exchange their data in an HIE. Given the highly secure nature of this data, and the underlying unease that patients may have about the electronic exchange of that data, the ultimate consent model will have a monumental impact on the overall effectiveness of HIE and interoperability efforts across the nation.
My resulting curiosity resulted in my asking the highly engaged group of Health IT specialists on Twitter to add this as a topic to our weekly tweet chat (check it out every Friday at 12 p.m. Eastern on #HITsm). It resulted in this discussion question: Should patients automatically be included in an HIE until they opt out? Or, should they be required to opt in?
In my opinion, this question leads directly into the resulting debate on “who owns patient data” (see the very spirited comment on this topic by Dr. Mike on the EMR Thoughts Blog). Generally speaking, the “opt-out” model is the most popular. As pointed out by Chad Johnson (@OchoTex), Maine has already adopted the opt-out model, where, by default, patient’s data remain in the HIE unless the patient opts out. All patient data (even those that have opted out) flows from the EHR. Then a rules engine at the exchange separates the participants from the non-participants. Additionally, at this point reportable information is directed to the Centers for Disease Control and Prevention. The consent management directive is created and stored by the exchange, and thus far less than 1% of patients have opted out.
It is my hope that, similar to the administration of the Maine HIE, the ONC will set the e-consent system on a foundation of trust to ensure the ultimate success of nationalized healthcare information exchange.
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