If we don't want all our medical issues available to all and sundry we must OPT OUT, as this link below:-
*What information will be extracted from my medical records ?
The data extracted - your Primary Care Dataset - will include the following:
Your NHS number
Your date of birth
Your postcode
Your gender
Your ethnicity
The date you registered with your GP surgery
Your medical diagnoses (including cancer and mental health) and any complications
Your referrals to specialists
Your prescriptions
Your family history
Your vaccinations and screening tests
Your blood test results
Your body mass index (height/weight)
Your smoking/alcohol habits
Certain "sensitive" data will not be extracted in the initial upload (so-called Release 1 of care.data).
For example:
Details of infertility and assisted conception, such as IVF
Sexually transmitted infections, including HIV, genital herpes, genital warts, chlamydia
Abortions
Gender identity matters, including reassignment
Domestic, emotional, physical and sexual abuse
But it has already been stated that "this list might be reconsidered for a future phase of care.data".
Be aware that prescription items that could reveal sensitive data, such as medication for HIV or chlamydia, or hormonal treatment for infertility, will be uploaded.
I went to my GP today and got Opt Out Forms. I have filled them in and will hand them back today. The fact that 'others' not connected to the Health Service can pay a fee to search whatever they wish.
They've been very careful not to use subjective and pejorative terms for many years in case they come back to bite their bums.
Jane's Plan
I will go to my surgery and say I am considering opting out unless I can have a copy of all my notes to make sure they are correct.
I have been waiting for an excuse to do this for a while - didn't really want to give the admin more work 'tho - as I too, would be the one photocopying records ad infinitum (in a school).
I had a NHS leaflet 'thro the door - strange I didn't see NI postcode & stuff mentioned? - def big brotheresque.. grr...
I chose to opt out of the electoral roll due to being viewed by all & sundry. I wonder where they got the resources from to collect/process all this info ???? waste of public money comes to mind, I did note a week or so ago the NHS were the 4th/5th? (can't remember!) largest employer in the UK?
As I said, I work in a school (a charity) and every public penny is accounted for - to be spent on education only. Absolutely correct!
Anyone ask us where our NI contributions go? ha! contributions is a good word - implies a choice! Rant over J x
The NHS leaflet is in response to GPs and other bodies complaints that the underpublicised nature of the data extraction scam meant that GPs might be in breach of the DPA if extraction went ahead without patients being aware and being able to opt out. The default position should obviously have been an opt-in one.
You're entitled to your records whether or not you agree to share your data. You have to pay if you want copies otherwise request an appointment to view your online records.
OK - so we fill in whatever opt-out form we are told to. We send it in to our GP surgery.
Is there anything that will close the loop and inform us that the codes have been applied to our records? Something to confirm that we really have been opted out?
With one GP (quite understandably) seemingly opting all his patients OUT without being asked to, is there any possibility of GPs anywhere who feel strongly the other way actually opting their patients IN?
At the very least we need to see the percentage opt-outs surgery by surgery.
If you opt out and your GP ignores your instruction and allows extraction of your data s/he will be in breach of the DPA. How you discover that your data has been made available is another matter.
My impression is that many GPs are very anti this extraction and sharing and are happy to comply with opt out instructions.
These are two excellent websites on this subject. The second link has sample opt-out letters and I used one of these to opt out the people in my household.
I am just aghast at this whole mess. It's a joke to say that the data will be safe because it isn't anonymous. I was shocked to discover that hospital data has already been sucked up and nobody was even told it was going to happen, and nobody even had the chance to opt out.
I didn't know it's already been uploaded. It has been kept relatively quiet with not much publicity. I didn't know a Company had already been given the go-ahead, for which it gets a payment to release private information. There must be many people who are still unaware.
I opted out when it was first mentioned. I think more information about this is being circulated now. But I wonder how they can justify making it an opt out situation as it goes contrary to the DPA which says you have to give permission to people to pass on your data.
Big brother stomping on our rights, in order to make money.
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