Per the by 8.4[1] of the governance model, the following is an
official announcement of the DataPortability Project (DPP).
On suggestion of the Healthcare taskforce, the DPP Steering Group was
asked to endorse the Health Data Bill of Rights (as found on
http://www.healthdatarights.org/).
The motion was voted in favour, assuming the text of the rights do not
change in the future.
The text agreed on is as follows:
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:
1. Have the right to our own health data
2. Have the right to know the source of each health data element
3. 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
4. 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.
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These rights will be incorporated into our future policy work, in
development by current workgroups.
[1]
http://wiki.dataportability.org/x/OIAt