“Surfacing the information, wisdom and data existing across the Internet is a key to the success of the data liberation movement. But the maximum effect won’t be achieved until the new system fully accepts that the new point of integration and decision making about individual data flows has to be the individual patient.”

David, your stories of listening (and *hearing*) citizen feedback are pretty amazing. It takes guts to open up your process to the scrutiny of your citizen peers, not just scholarly/collegial peers.

Carol Diamond’s remarks at Health 2.0 DC also come to mind. She made the point (paraphrasing here!) that we don’t yet know what people will do when they get access to their own health data, but that is no reason to hold it back. I’ve seen that play out many times over the last decade of studying internet adoption & usage patterns – we really can’t predict what people will love, what they’ll hate, and what they’ll come up with if given the opportunity. In health care, my advice continues to be “follow the patient” (another form of “let e-patients lead”).

I’d like to add a 2.5 to the Open Gov (Ninja) list above.

Include citizens and communities in the team that opens data. Let their voice and experience guide the process of structuring the data and services, to enable the creation of tailor-made tools to solve the challenges they are facing. Give them ownership of the process.

It is time for all of us to get organized and to get these HIPAA regulations repealed. They have no benefit for us and in fact are significantly slowing down our ability to create the rapid learning system we discussed at the IOM last October.

Leroy Jones captured a bit of it here:
http://www.technicaljones.com/2010/06/health-20-dc-interview-with-an/

Being in DC, this Health 2.0 was particularly interesting – in part because of the enthusiastic participation of those in the federal government – who are clearly in it to empower families – just the opposite of the usual governmental stereotype. One of the most enjoyable, passionate keynotes was given by Aneesh Chopra, the CTO for the Executive Office of Science and Technology (Office of the President).