One of the key issues in the Health/Medicine 2.0 movement is who has control over medical knowledge and information. Raw data produced in hospital laboratories have by tradition been unavailable to patients. But one would expect that data produced by implanted medical devices should be accessible for the person who carries them.
Not necessarily so. A case in point is an American patient, who had a defribrillator implanted after being diagnosed with hypertrophic cardiac myopathy. The patient believes having access to data collected by his device could help him find out what triggers his abnormal heart rhythms. He has already discovered that alcohol and caffeine may be involved, but more detailed data would make his self-analysis more accurate.
But the manufacturer has told him that the defibrillator device is implanted to deliver therapy, not to provide him with information; that’s not part of their “business model”. A spokesperson for Medtronic says they understand patients want to see their data, “but we want to make sure it’s data that is valuable to them”.
Basically, it’s a question of who owns the data and who decides what’s valuable. It reminds me of some social media’s view that everything I write on “my” profile is their property, or search machines who want to sort the results of my searches according to what they believe is valuable for me.
(from Technology Review).