I’ll swipe this:

Participatory medicine postulates that combining patients’ commited research with health experts’ years of training and experience, brings a heightened level of critical analysis to the table.”

This has led to several inspiring posts. Robin S, a Cushing’s patient, writes My Health Care Records, My Propertyabout harm that happened related to her own data. Blogger “Doc Rob” wrote a great comment in response, including this:

I think there is a real fear on our side that is not unjustified that we will have to take a huge amount of time justifying why we didn’t comment on their low BUN, abnormal Albumin to Globulin ratio … There is so much interpretation that happens on our end (we act as a filter), that it seems to open the floodgates to let everyone in on it and let them try and decipher their results.”

Another is the call to action Aux Barricades! from Craig Stoltz, echoing the cry of the French Revolution, where what was needed was total destruction of a total imbalance of power. I’ll leave you with some of his words, powerfully pointing out that we’re in a similar moment – this issue has immediate political importance in Washington:

It’s important to have the interests of patients plainly declared… The most visible and active stakeholders [in current health IT talks] include big IT vendors, insurance companies, hospital conglomerates, physician groups, trade associations, venture capitalists and, not least, drug and device makers.

They all have the usual “access” to the policy making process via lobbyists, contacts on the inside, campaign contributions and swank public affairs firms with expensive furniture in their reception areas and lots of friends in the media.

And so yes, it’s essential to ensure patients are represented in the midst of all this.

And none of those parties are even thinking about how to let us see our own data, in the systems they’ll sell to get the Federal stimulus money.

Great post, Sarah. Our ability to help ourselves and our family members will be greatly affected by this.