A new initiative, launched today at HealthDataRights.org, brings together all manner of patients' rights activists — doctors, researchers, software developers, writers, entrepreneurs, health economists, and of course, health and medical bloggers — calling for "the right to access all health data about ourselves, so we can make the most effective health decisions using the resources we feel are most appropriate."
Here is the Manifesto we are putting forth:
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In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. All people:
* Have the right to their 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 their individual health data, without delay, at minimal or no cost. If data exist in computable form, they must be made available in that form, without delay, at minimal or no cost.
* Have the right to share their health data with others as they 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.
To clarify, this is NOT a revolt against HIPAA privacy regulations, but rather a cry for every individual's right to a copy of his or her own medical records, in their entirety and for free — because "having and understanding one's own health data is as crucial to lifestyle decision-making as accessing one's bank account."
You can read the full FAQ on this campaign here, which states, in part:
"If we collectively assert our health data rights, we'll impact care, engagement, quality, errors, outcomes, and meaning; we'll move our current unaffordable and dysfunctional health system to one that more effectively serves patients by allowing them to have the information they need to fully participate. We believe that this flow of information will drive more engaged patients, better health decisions, lower costs, and better medicine."
Amen to that.
[You can also follow the HDR movement on Twitter here]