No patient/caregiver/provider can do his or her job without access to data. That's why I support "A Declaration of Health Data Rights" from HealthDataRights.org.
ENDORSE NOW
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:
ENDORSE NOW
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.
ENDORSE THE RIGHT TO ACCESS TO YOUR DATA NOW
Are we betting on the "me" in medicine?
If e-health was simple...
Mother of all health reform
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ReplyDeleteHa... not sure I want my comment after the spam above :)
ReplyDeleteSummer vacation must be nice as you have been a bit quiet here.
I know you are strong in the health space but as I read this idea of right to access I am torn.
More access is a duh kind of thing. We live in a time where data seems to know no bounds. But on the other hand the kind of access you are wanting your readers to endorse costs money and resources. Does having the right to access my data also mean I have the right to force companies to digitize and file my "complete copy of our individual health data"? That seems like an awfully large burden. Great idea but hard to visualize.
If it is possible only google can do it.