I know this is an old thread, but I've just stumbled upon this from something mentioned in another thread and think it might be relevant to resurrect it, if they are sending out leaflets this month.
I'm horrified at the lack of publicity and lack of proper public debate over it as I've not heard a thing about it until today. Having seen the information that is supposed to be being sent out to the public about it this month, am concerned at just how transparent it is and how little information or reassurance the NHS is actually giving.
Having been so bothered about Bounty and its access to patients and their data in the past I find it concerning. All this business about explicit consent seems very worrying. When might you be approached, and by whom to give this information for example? A lot of the concerns about privacy and what constitutes informed consent that I had there, will rear their ugly heads again. Will people be mislead into consenting (in the same way as the Bounty Lady with her benefit form ruse) or worse still will people believe that they won't get certain treatments if they don't consent to sharing their data or approached at a time when they feel particularly vulnerable? Especially if its about getting, unusual or even experimental treatment. It has the potential to undermine equality in care if misused.
Thinking about it from the perspective of maternity wards because of my feelings about Bountry and the implication about it being an opt out system, it immediately stuck me about how on earth would you be able to protect your child's records, before they were able to get their hands on it? I'm not entirely sure you could from what I understand. Equally, it being an opt out system means that there are some potentially very vulnerable people out there who will have information about their health being shared. Given the above debate over whether a women who has just given birth might be deemed vulnerable for example, opens it up to a whole minefield of ethics. Are there going to be groups targeted by this as a result?
Whilst I like the idea of studying medical records; I am a supporter of what Ben Goldacre has been trying to do, I am deeply uncomfortable about how this appears to be being pushed through, the weaknesses in the system and the apparent lack of thought as to how it is going to work in practice. The potential benefit to us all is massive, but the potential threat I feel is perhaps too great at this stage.
I feel that when letters go out this month there are going to be three camps - the completely indifferent, the completely don't understand and the completely terrified. In terms of the third group I actually feel for GPs as I'm sure they are going to be bombarded by patients panicking about what is happening.
I wondered if any of the previous posters had changed their minds in someway, by perhaps felt more reassured/more worried since this thread was started and how other people felt about how it was being handled.