I appreciate your being honest about how the system works, and that part of its function is to aggregate data.
I don't think the system can work in the ideal way I would like - the system's priority is the system itself, regardless of the wishes of the individual. As you say, doctors would be sued. I would say that suing, etc relates to the culture that has grown up around the system. And perhaps the medical system was always this way - ie system-centric, rather than patient-centric. With the onset of the 'IT age', we get to see that system-centric fruit fully 'ripen' such that everyone's data can be seen by anyone.
You might say - as I do - that it is for the person who is being treated to be the collector of their information. A different culture would have grown had we had the patient at the center of our considerations.
I'm sure people have been warning all the way down the line, about the issues over privacy. It is frustrating that at every turn the expediency over the system overrides all other concerns. After, what 100 years(?) we find ourselves where we are no, with the patient having no control (and often no knowledge) of the issues that relate to them, while the system has it all. I would go further and say that this outcome is by design, as those running the system - those who govern us - would prefer that we were ignorant while they are informed. Its pretty dystopian anyway.
> After, what 100 years(?) we find ourselves where we are no, with the patient having no control (and often no knowledge) of the issues that relate to them, while the system has it all.
I'd argue this, but I recognise I am in a privileged position of knowing how the systems work. HIPAA (in the US) and similar legislation in other countries actually puts a lot of power in the hands of patients - if they know how to use it.
You are never going to be in the situation where the patient controls their data completely (what happens if they are non-responsive, drunk or psychotic and unable to legally consent to an intervention they desperately want). I think we shall move towards access to data, and possibly interpretation of that data, but not ownership. Control of the data will always come with caveats, as the body paying for the treatment will always assert their right to how the data is transmitted to minimise costs.
I don't think the system can work in the ideal way I would like - the system's priority is the system itself, regardless of the wishes of the individual. As you say, doctors would be sued. I would say that suing, etc relates to the culture that has grown up around the system. And perhaps the medical system was always this way - ie system-centric, rather than patient-centric. With the onset of the 'IT age', we get to see that system-centric fruit fully 'ripen' such that everyone's data can be seen by anyone.
You might say - as I do - that it is for the person who is being treated to be the collector of their information. A different culture would have grown had we had the patient at the center of our considerations.
I'm sure people have been warning all the way down the line, about the issues over privacy. It is frustrating that at every turn the expediency over the system overrides all other concerns. After, what 100 years(?) we find ourselves where we are no, with the patient having no control (and often no knowledge) of the issues that relate to them, while the system has it all. I would go further and say that this outcome is by design, as those running the system - those who govern us - would prefer that we were ignorant while they are informed. Its pretty dystopian anyway.