For more information about data sharing, please visit the General Practice Data for Planning and Research: NHS Digital Transparency Notice page on NHS Digital.
Many patients have contacted us as they are very concerned about the possibility of their personal confidential information being shared with a third party. So we have put together the following information to help people to make an informed choice about whether they want to opt out of the data sharing.
There is a lot of information to take in, but please can we urge you to read the detail so that you are making your decision based on facts and not some of the soundbites used in the media.
We fully respect the patient’s right to choose whether they want to participate in data sharing or not, but it can take time to process and code any requests to opt out, so please complete and return the forms as soon as you can if you wish to opt out.
Can we please make it very clear though that there are two opt out options and you can opt out of either, both or none. Hopefully the diagrams will help make this clearer.
As of 1st July 2021 your data will be shared with NHS Digital to help improve health, care and services although this date may be put back to 1st September 2021
Patient data from GP medical records kept by GP practices in England is used every day to improve health, care and services through planning and research, helping to find better treatments and improve patient care. The NHS is introducing an improved way to share this information – called the General Practice Data for Planning and Research data collection.
NHS Digital will collect, analyse, publish and share this patient data to improve health and care services for everyone. This includes:
- Informing and developing health and social care policy
- Planning and commissioning health and care services
- Taking steps to protect public health (including managing and monitoring the coronavirus pandemic)
- In exceptional circumstances, providing you with individual care
- Enabling healthcare and scientific research
GP system suppliers will pseudonymise the data at source using the national pseudonymisation tool provided by NHS Digital then securely transfer the data collection as a fully encrypted XML file to NHS Digital.
Any data that NHS Digital collects will only be used for health and care purposes. It is never shared with marketing or insurance companies.
- This is happening by law – GP’s cannot say no.
- This is for secondary uses but there is a re-id possible but only in specific and securely governed circumstances such as COVID-19 purposes under COPI
- The data will not leave the practice in an identifiable form.
- The System Suppliers will pseudonymise the data before it goes to NHSD.
- NHSD become Controllers for the data at the point of submission not when they receive it.
- Type 1 Opt outs will be observed at the present time.
- The National data opt out will not apply to the collection of the data.
- The National data opt out will be considered at the point of dissemination as is the policy.
- Only structured and clinically coded data will be collected (free text, images and documents will not be collected).
- Legally restricted codes for Gender Recognition and Human Fertilisation and Embryology will not be collected.
NHS Digital will not collect any patient data for patients who have already registered a Type 1 Opt-out in line with current policy. If this changes patients who have registered a Type 1 Opt-out will be informed.
If you do not want your patient data shared with NHS Digital, you can register a Type 1 Opt-out with us. You can register a Type 1 Opt-out at any time. You can also change your mind at any time and withdraw a Type 1 Opt-out.
Data sharing with NHS Digital will start on 1st July 2021.
If you have already registered a Type 1 Opt-out with your GP practice your data will not be shared with NHS Digital.
If you wish to register a Type 1 Opt-out with your GP practice before data sharing starts with NHS Digital, this should be done by completing the Type 1 Opt-out form to us by 23 June 2021 to allow time for processing it. If you have previously registered a Type 1 Opt-out and you would like to withdraw this, you can also use the form to do this.
If you register a Type 1 Opt-out after your patient data has already been shared with NHS Digital, no more of your data will be shared with NHS Digital. NHS Digital will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out.
If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out (also known as Type 2 Opt out).
What do you need to do?
If you are happy for your data to be shared as above, and haven’t previously opted out – you do not need to do anything.
Type 1 Opt-Out
To stop sharing your details with NHS digital (or to opt back in, if you have previously opted out). Complete the Type 1 opt-out form (or you can complete this to opt back in).
If you are not able to complete this form, call 0118 948 6900 for a form to be posted to you or come into the practice and we can give you a copy to complete.
- Hand the form into the reception at the Surgery
- Post it to us at: Emmer Green Surgery, 4 St Barnabas Road, Reading, Berkshire, RG4 8RA
- Or attach and email to: firstname.lastname@example.org
Type 2 Opt-Out (Also known as National Data Opt-out)
If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, which has been already shared with them (or to opt back in, if you have previous opted out).
Please note, you can only do this via the following way – as a GP practice we cannot opt you out of Type 2 (National Data Opt-out).
You need to complete the National data Opt-out online form via Your NHS Matters page on the NHS website.
For more information, please view the How the NHS uses your patient data from GP practices to improve health and care YouTube video.