I draw a distinction between the use of technology in health care and long-living health records.
I recently went to CebIt and had a long chat with the guy at one of start-up stands. His company makes and sells health monitoring and diagnostic devices. These allow people to monitor the status of their own health and to provide diagnostic information to health care professionals.
IMHO, this is an excellent use of technology that better engages individuals in managing their health. There was another company that has developed a set-top box that assists in monitoring the elderly and infirm while they continue to live in their own homes. Another good use of technology.
There seems to be minimal potential for privacy issues, although some devices do use smartphones to run apps, store diagnostic information and send data and alerts to others.
When it comes to health records, the situation is different. The information held in long-living health records has limited value. The health care professional primarily wants to know the current state of the patient as well as the immediate past. Mostly history is less important. That’s why they will always run tests. It’s a bit like taking your car or computer in for repair. They will ask you what the problem is and how long you’ve had it. The fact that you had the same or different problem years ago is of limited relevance. In fact, it is quite possible that analysing a long history file could well take up time and potentially be misleading. Sometimes it might be useful to have a complete history, but the proportion of cases where this matters is AFAIK not known.
In all the material I have read about health records, it has been taken as an assumption that having someone’s health history will (might?) deliver huge benefits to that individual. I have never seen a justification of this assumption, nor any sort of tradeoff against the potential costs of gathering, centralising and storing this data.
However, there could well be value from having “big health data” in order to better manage the health of the community, but this data is significantly different in its nature (you do not need to link it to individuals), its purpose (to manage population health) and in the way it is used (statistically, not diagnostically).
Conflating these two purposes of health information, whether it has been done deliberately or through incompetence, has lead to doubt and mistrust among many health professionals and not a few patients. This means that the valuable health data will not be collected because the whole area of health information has been badly managed.