Personally, I think that one of the less welcome side effects of this is that the way the Government and the NHS have gone about it, it means that medical researchers will also be denied access to data in relation to those of us who opt out
I think the most disgusting thing about this sneaky, underhand and ill thought out scheme conducted by this government, is posting information leaflets in-between junk mail for the local pizza outlet and the local gardening centre, with the aim to trick people by not fully explaining that the care.data scheme is not the same as the Summary Care Records, and having decided that we are all going to opt in, by not providing an opt out form.
I wouldn't put it passed the Government to have deliberately done this to confuse folks, and people are being given forms to opt out of the Summary Care Records instead of the care.data scheme when they contact their surgery.
The other side effect may be that patients now knowing the confidentiality between the GP and patient relationship has been shot through. Patients may be more reluctant to confide in their GP or even hesitate making an appointment to see them, when early diagnosis may mean the difference between life and death. No research or data collecting/selling will be of any use to these people.
The data sent for research from the GP is anonymised and far more research material is gathered from hospitals by the National Institute for Health Research (NIHR). Your GP won't know about the detailed observations recorded in a patient's 'care plan' and hospital notes. He/she will get information consisting of, eg: Consultant, date of admission/discharge, test results, medicines and diagnosis.
I can see that researchers would be 'jumping for joy' to have the medical history of every man, woman and child in England on a database for them to access, however, nobody seems to mention that unless it is of national interest, like an epidemic, every patient has to give their consent to take part in research.
GPs can't just send off information about you without your permission, unless it is between other health professionals concerning your health. We accept that has to happen within the NHS and it is generally beneficial to us (the patient) if health professionals 'talk' to each other.
GPs are independent contractors and they have been put in this position by the quango HSCIC, who are forcing them to upload data for this scheme.
Data which will be combined with other data and made available to a multitude of organisations outside of the NHS and the UK, who are willing to pay the price....Virgin Health Care, BUPA, GlaxoSmithKline, Insurance Companies,Tesco etc.
Every child born after data is extracted in early March, the child will automatically be opted in, and the child's parents will have to opt them out when they first register the child with a GP.
The Health and Social Care Information Centre (HSCIC) was set up as an executive non departmental public body last year. - In other words it's a quango 'warehouse' to gather data of individuals from care settings across the NHS. Neither doctors or nurses will have access to it.
HSCIC won't be running the servers, the contract has been given to the private company Atos ..... Atos healthcare are the people working on behalf of the DWP accessing the sick and their ability to work.
Mmmm, Atos running the system housing your medical history and conducting examinations/assessments for the DWP.?
When there is a breach of data because no system is safe, any IT expert will tell you that....When your private and sensitive data ends up in India or some other far flung country.The government by contracting out to a private firm, they'll will be able to say, "it's nowt to do with us."
The fact that Atos are involved with their appalling record in connection with the DWP. That alone would be enough to make me opt out of this care.data scheme.