Last week I spent a half day in the Indian Treaty Room of the Eisenhower Executive Office Building. I was joined by at least 50 others, including patients, health IT vendors, healthcare providers, and quite a number of federal agency staffers, as we talked about the next steps for providing patients with access to their data.
Kicked off by Matthew Holt (@boltyboy) of Health 2.0 fame, and hosted by Todd Park and Farzad Mostashari, this meeting was a followup from last year's Patient Access Summit (which I also attended with my daughter).
We reviewed the progress we've made since our first meeting (about a year ago), and identified the things that we still need to work on. As an outcome of this meeting, we identified six separate gaps to address:
- Awareness: More needs to be done to raise awareness among patients, providers and health IT vendors about patient rights and technology available to access data, and Blue Button Plus alignment with Meaningful Use incentive programs.
- Services: Identifying needed services (e.g., data reconciliation and filtering), and prioritizing them was another issue. We expect that industry will develop services as the needs are identified. In other words, the ONC role here is more to shine a light one what is needed.
- Trust: "Trust me", and "I'm here to help" are two statements that get even scarier when you start them off with "I'm with the government." There's a lot that needs to be done to develop trust. Some of that is time, and some of that is awareness.
- Provisioning: This is more about provisioning patients, and/or making it easy to provision patients with a Direct address, or an identity supporting OAuth 2.0. It was focused on workflow and user experience rather than technology.
- Pull: We need data holder participation, and when we asked for it, a number of them (in fact, about 1/4 of the room) raised their hands.
- Payers: There's an interim payer specification that we'd like to see payer's start using, and a need to get that on a standards track.