Ownership and access to medical data

Unpatients—why patients should own their medical data

Eric Topol says in Nature Biotechnology:

Today, in the United States, health data live in a plethora of places, from electronic health record (EHR) systems, insurance claims databases, siloed personal health apps, research and clinical trial databases, imaging files and lots of paper. Although seemingly everywhere, any true semblance of an overarching organization or standardization of medical data are lacking, whether at the individual or societal level

His proposal is straightfoward: the ownership of the clinical record is of the patient. This situation is completely different in our country. We have public centralised repositories and the patient is the owner. There is still a lack of coordination and many things to solve, however the basics are covered in the publicly funded System, that's not the case in the private sector.

In contrast to the legal and technical difficulty an individual faces to obtain all his or her own medical data is the relative ease with which hackers have managed to breach ~100 million patient records in the first half of 2015

And his proposal:

 We must begin talking about creating a health data resource in a much broader and more universal context, controlled by the individuals who supply the data. This is a unique moment where we may be able to provide for personal control and, at the same time, create a global knowledge medical resource.

Sounds interesting, though methodology is crucial for success.


PS. Hacking electronic records:

The timeline for electronic medical data hacks in the United States of over 1 million individuals