How can I opt out of my data being shared via the GM Care Record?
The GM Care Record joins together our regions’ different NHS and care organisations to help hospitals and other care services access patient health and care records quickly and securely.
The GM Care Record enables health and care staff to see up-to-date, limited information regarding an individual’s health and care. It includes vital information such as allergies, medication, test results, and any interventions they may be receiving or have had in the past.
Everyone registered with a Greater Manchester GP is automatically opted-in to the GM Care Record unless they have previously opted out of sharing their GP records.
How can you opt out of the GM Care Record?
You can contact your GP who can discuss the option with you and apply a code to your GP record to prevent a shared care record being created. You can opt back in at any time by informing your GP.
We want anyone who does opt-out to understand that it could negatively impact the care the NHS and social care services can provide. If health and care staff can’t access medical record:
- It might mean that tests or investigations are repeated because results from other organisations can’t be accessed.
- You may need to repeat the same information to different staff.
- The staff treating you won’t be able to see what has happened to you in different parts of the NHS. Staff will only be able to see your record in that specific organisation such as that particular hospital or GP practice.
- Staff might not know what medication you are taking.
- It may delay treatment.
- It will not stop health and care staff contacting one another to ask questions about your history.
- You may not be conscious or able to share details about your medical history if you arrive at hospital.
GM Secure Data Environment (SDE) for population health research:
NHS Greater Manchester have also designed a secure data environment where, working with technical staff at NHS England, they create a de-identified copy of that data by removing identifiers e.g. name, address, date of birth etc. This de-identified data can then be linked through a pseudonymisation process with other national and or local data sets. This data is then further anonymised and used to support important research and the planning of health and care services (non-research). Examples could include the development of new drugs and treatments.
Whilst you are automatically enrolled into the GM Care Record, you have the option to object to your information being shared for individual care as described above and to opt-out of your data being used for research and planning.
How you can opt out of your data being used for planning and research:
You can still have a shared care record to support your treatment and care, but you can opt out of your data being used for planning and research in 3 ways:
- Stopping a GP practice from sharing your data for research and planning
This is called a Type 1 Opt-Out.
• To do this you need to fill in an opt-out form and return it to your GP practice. You need to either download a Type 1 opt-out form, or contact your GP surgery who may be able to assist you to complete the form on the telephone or may be able to provide you with a printed copy.
• Only your GP surgery can process your opt-out form. The GP surgery will be able to tell you if, and when, you have been opted out.
If you choose a Type 1 Opt-out, your GP will not share your data for research and planning but your data will still be used to support your direct care.
Find out more about Type 1 Opt-out from Opt out of sharing your health records – NHS (www.nhs.uk).
Once the Type 1 Opt-Out has been applied by your General Practice the GM Care Record system will acknowledge this Opt-Out and automatically remove your record from further processing for planning and research purposes. - Stopping NHS Digital and other health and care organisations from sharing your data for planning and research
This is called a National Data Opt-Out.
To opt out online or find out more, you can visit Make your choice or contact the NHS Digital Contact Centre by ringing 0300 303 5678.
If you choose this opt-out, NHS Digital and other health and care organisations will not be able to share any of your personal data with other organisations for research and planning, except in certain situations. For example, when required by law.
If you want to check if you have opted out, you can enter your details againat Make your choice or check your settings in the NHS App. You can opt out, or opt back in again, at any time.
- Stopping your de-identified data being used for planning and research within Greater Manchester
We apply the Type 1 opt out implemented via the GP practice and the National Data Opt out already via the secure analytics platform.
If you have either of these opt outs applied to your record your GMCR data will not flow into the secure platform for planning and research.
If you do not want to apply a national opt out and just opt out of your data from the GM Care Record being used for planning or research within Greater Manchester you can contact us as follows:
– Calling us on: 0161 947 0770
– Emailing us at: contactus.caregateway@nhs.net
– Or writing to us at:
Information Governance Team
NHS Greater Manchester
4th Floor, 3 Piccadilly Place
Manchester
M1 3BN
The Health Research Authority (HRA) and the Secretary of State for Health and Social Care has given Section 251 support for the activity following advice from the Confidentiality Advisory Group.
