A Declaration of Health Data Rights
From the new initiative HealthDataRights.org:
In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:
* Have the right to our own health data
* Have the right to know the source of each health data element
* Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
* Have the right to share our health data with others as we see fit
From Esther Dyson's Huffington Post article, "HealthDataRights Beta Version":
The best analogy is what happened with financial data. It was kept in silos; it was obscure and hard to get at. Then along came Quicken (and other user software, to be sure). Suddenly the banks' data vaults opened up. Eventually almost all financial institutions let users get hold of their own information and (gasp!) even to aggregate it by themselves. Now there are online services that help users manage their own information, consolidating bank accounts, stock accounts, credit card information and other data. They can massage their own data, and they can compare their own financial metrics to other people's (mostly in aggregate) if they wish.
In Tim O'Reilly's "A Manifesto on Health Data Rights," he compares the health manifesto to the Open Government Data Principles, which are now influencing discussion at the White House, and to the robustness principle, an Internet software design guideline that is often summarized as: "Be conservative in what you do; be liberal in what you accept from others."
