We previously wrote in regards to the Dataportability Healthcare Taskforce endorsing the Health Data Bill of Rights. We are now pleased to announce that the Dataportability project is officially endorsing the Health Data Bill of Rights as stated below ….
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.
The Dataportability project is officially endorsing these bill of rights because it focuses on the core problem of granting consumers both access and control to their data. This belief is completely in-line with the Dataportability view on consumer empowerment. More so, we also believe that thus far there has been a missing piece of the discussion on practice to consumer interoperability.
Additionally, the Health Data Bill of Rights focuses not on any particular solution or specific implementation. In fact, it stresses that consumers be granted access and control to their data even if it only exists on paper. This focus on the root problem independent of technology is critical as it sets the necessary foundation. From this foundation the market can then build solutions.
With the ever increasing role portability is playing within healthcare, it is with great excitement and enthusiasm we endorse these rights. We strongly encourage you endorse these Health Data Bill of Rights as well.