The government wants to 'share' your records in two different ways.
- It wants the right information about your medical history to be available to support the HCPs involved in your care as you move from one care setting to another. This is to prevent medical errors, to prevent you from having to repeat all the pertinent history over and over again (with the likelihood of it being written down wrongly in one care setting or another) and to enable your care to be more appropriately joined up.
In the course of treatment information also has to flow to support billing activities, so the hospital can reimbursed by the commissioner, your CCG.
You can express your wishes about this kind of sharing in a number of ways, and it isn't very consistent in the way it's implemented in different systems. However, to support your care, some information does have to be shared. It always has done, since before there was an NHS.
- It wants to exploit your records - I don't necessarily mean this pejoratively. It wants to use your medical data, in conjunction with lots of other people's medical data, for research, risk stratification, service planning and all the other back office activity that manages the delivery of care to the population as a whole. Does Vodafone use your call records for the same kind of purpose? Yes it does. (I appreciate call records and health records are not the same thing).
Rarely does this second (and secondary) purpose need your records to be identifiable - unlike in the first case, where of course it does. However, you are reliant on those who are extracting the data and those who are allowing the data to be extracted to be doing so in the most appropriate way. This was really the crux of care.data. Those in charge insisted it had to be extracted as identifiable data and then the population had to trust them not to release it in identifiable form unless it was warranted. Whereas many opponents wanted the data to be de-identified at source so that what was leaving the health organisation (the practice in this case) was aggregate data for research.
You may or may not class this second activity as 'sharing'.
So how you approach expressing your concerns about medical record sharing depends on which of these types of sharing you are referring to. Either way I think you probably need to keep reading on the subject until you're clearer about your concerns. It is simply disingenuous to say that a mental health condition like anorexia, with extremely severe physical side effects (including death), is not relevant to your care. Before deciding not to allow this (hypothetical) diagnosis to be shared, you would need to be appropriately counselled as to the implications for your care. That's 'your body, your choice' - it needs to be an informed choice.