Improving portability between the practice and the patient

Dataportability has been focusing on Healthcare for almost a year now with its Healthcare Taskforce. Recently, this taskforce came across the Health Data Bill of Rights.  In summary, the rights are 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.

What makes these bill of rights so critical, and why it’s gathering so much momentum with others, is that it focuses on the core problem of granting you the patient access to your data.  Currently, your data is stored in silo’s at many of the different practices you visit and is extremely difficult for you, or other practices to access. However, the conversation in regards to access thus far has been monopolized by standardizing the digital format to increase interoperability between practices.  Practice to practice interoperability is a very important problem to solve.  However, it completely misses the data portability between the practice and the patient.  This bill or rights brings much needed focus on the patient.

I’ve asked the Steering Group of the DataPortability project, to follow the recomendation of the Health Case task force, in fully endorsing these principles

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