Health Data Bill-of-Rights endorsed by DataPortability Project

28 July, 2009 – 10:21 am

DataPortability officially endorses the Health Data Bill of Rights.  There is, in my opinion, one key item missing from the Health Data Bill of Rights: Ownership.  People should not just have the “right to our own health data” but the OWNERSHIP of our Health Data.  Only with ownership explicitly given to the individual can the Health Data Bill of Rights have any real meaning.

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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 data element
• Have the right to take complete possession of a complete copy of your individual health data, without delay, at minimal or no cost; if data exists 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

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights