Pursuant to DPP Bylaws, a Motion was put forth to endorse HEALTH DATA BILL OF RIGHTS via mailing-list vote. The motion was originally submitted to the DP STEERING MAILING LIST by the chair of the Healthcare Taskforce, Anthony Broad-Crawford, on July 6, 2009, specifically:
I have per my status as Healthcare task-force chair endorsed from that taskforce. However, I would like to officially propose That the DataPortability Project officially endorse the Health Data Bill of Rights (as found on http://www.healthdatarights.org/). Per the by-laws this motion will be open for seven days. However, the polling period may be reduced if all 12 steering members vote. Please let me know if you have any questions.
The exact content of the Health Data Bill Of Rights that is part of the motion is:
A Declaration of Health Data Rights
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
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.
On July 20, 2009, the DPP Chair, Daniela Barbosa, affirmed the acceptance of the motion via the following email:
The voting for this motion has been open for 12 days- at minimum per the by-laws the motion needed to be open for seven days unless all 12 members of steering voted. The voting period is now closed.
10 out of 12 members of Steering have voted for the motion (see vote count below and in this thread) that was put forward by Anthony Broad- Crawford Steering member and current chairperson of the DataPortability Project Healthcare Task Force (HCTF) [1].
Therefore the motion for the DataPortability Project to officially endorse the Health Data Bill of Rights (as found on http://www.healthdatarights.org/) with the assumption that any endorsement coming from DP either uses a date stamp or copy of the text at that time, in case the healthdatarights.org site evolves in unexpected directions.
Voting By Steering Members:
Daniela Barbosa +1
Elias Bizannes +1
Steve Repetti +1
Steve Greenberg +1
Dan Brickley +1
Anthony Broad-Crawford +1
Brady Brim-DeForest +1
Drummond Reed +1
Phil Wolf +1
Steve Williams+1
Christian Scholz - absent
Chris Saad - absentSteve Repetti--- please record this motion in our Steering Motion page [2] and provide this link to this discussion thread for the record.
Anthony-- thank you once again for bringing this motion forward. We look forward to providing further support so please let us know what the next steps are and how the DataPortability Project members can further support this endorsement.
regards,
~daniela
Daniela Barbosa
DataPortability Co-founder and Chairperson
As a result of this action, the motion has PASSED and has been entered into the DPP Motion Ledger as Motion #2009-11 (2009-07-20).
- Here is a link to the mailing list discussion: discussion
- http://www.healthdatarights.org/)