Patient ownership of medical records and Patient centered outcomes research

Patient centered outcomes research has been an emerging area since 2010 http://www.nejm.org/doi/full/10.1056/NEJMp1207437 with an annual funding of 2 billion USD from PCORI to answer 'patient centered research questions such as the ones here:http://www.pcori.org/research-we-support/pcor/

One way of answering these questions for our patients could be a hybrid PHR-EHR 'Patient centered online health record' PCOHR where physicians and patients work together toward reaching optimal health outcomes.

Here's one example http://www.udhc.co.in/INPUT/displayIssueGraphically.jsp?topic_id=1354 where the patient has shared the history and the physician provided treatment details are also available on scrolling through the images and the patient has also posted a recent update on his blood sugars measured over the week.

Question of ownership:

However in the above example the patient has simply consented (http://www.udhc.co.in/STATICS/docs/udhc-english.pdf) to his record being used by the hospital physician and 'patient information manager' to help him but he has no control over the record in the sense he cannot delete it. This is only because the patient is not computer or internet savvy enough to generate his own record and needs help from the hospital 'patient information manager' to share his/her information.

There are other patients, urban users who are quite computer savvy to generate and maintain their own records www.udhc.co.in/INPUT/displayIssueGraphically.jsp?topic_id=150, completely free from the physician's or administrator's guidance and they can easily delete their records at will but they do not do that mostly because they benefit from the online guidance of the physicians who monitor their health and guide them through their online updates.