Change the current NHS England proposals to automatically collect data from GP patient records unless patients 'opt out'. This is called automatically 'opted in'. The care.data project will then harvest GP data on a monthly basis and the data could be made available to private companies.
No data should be collected, unless the patient also has online access to all their own data. It seems totally unethical that date is collected about me and shared with 3rd parties, but I am not given access. Not only does this reduce safety for the patient, it also facilitates toe collection of data which may be inaccurate (the patient would have the motivation to ensure that their data was checked and considered accurate)
A basic principle of medical ethics is 'informed consent'. This means patients should always be aware of what is happening to them an their information. By choosing to automatically 'opt in' patients in this way it violates the principle of informed consent. If the principle of informed consent is broken on such a wide scale once it opens the door for many future breaches. The question of whether care.data is good or bad is irrelevant to the importance of informed consent.
Totally agree about informed consent - but that is for medical procedures. What we are talking about here is the opportunity to improve lives now and in the future via the use of data. Speaking purely personally, I have absolutely no problem with my anonymised data being used for these purposes. In fact I would be pretty furious if it wasn't. If you have an opt-in scheme the majority won't bother and then the data will be useless. I do agree that there needs to be better public info though.
Much clearer explanation of the benefits, and risks of the sharing of their data. Much more detail on when and how and why it will be shared, and the right to opt out again.
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