Unpatients—why patients should own their medical data

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.
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.

There appear to be two definitions floating about for the term, which are not identical, though may be thought to have some overlap. The first is from the source cited in the question, the second from www.nature.com

unpatient.

Term coined in 1996 by the group of bioethical US Albert R. Jonsen to refer to a persona currently healthy but genetically predisposed confirmed to a certain disease (p. eg., cancer breast or heart failure). It's not exactly a sick and need treatment, but neither considered completely free of disease and must undergo a close medical surveillance.
In Spanish, it has been proposed translation for 'pre-patient ', which can be used in the case of people who They receive no health benefit for its pre-genetic disposition; for those who must go periodically to the doctor, however, already true patients certainly is clearer translation type of 'presymptomatic patient'

(via google translate)

Unpatients—why patients should own their medical data

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.
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.