[Unpatients—why patients should own their medical data][1]

> We have coined the term 'UnPatient' for our new model of data
> ownership as it has the double entendre of the patient subjected to
> medical paternalism and information asymmetries, along with the idea
> that it has taken far too long to become free to use our medical data
> as we see fit and to own it. Without connecting to their medical data,
> people are unnecessarily being hurt and dying.<Br> Accordingly, we
> urgently seek to promote ownership of one's medical data as a civil
> right and as a pivotal strategy to further digitize medicine,
> providing a new resource to potentially help every individual who
> willingly participates. This is the essence of the benefits of
> democratization: shared control provides shared benefits at an
> exponential rate. When individuals inform the collective, and the
> collective informs the individual, we will have the learning health
> system we seek.

Although I'm putting this as an answer, I think it is more of a pointing in the direction of where an answer might be found. 

  [1]: http://www.nature.com/nbt/journal/v33/n9/full/nbt.3340.html