You can opt out
The pseudonymised data that CPRD itself receives from GP practices is de-identified, meaning that GPs do not need to seek individual patient consent when they share data with CPRD.
For patients in England, where their GP practice has consented to data they provide being linked to secondary care and other health-related datasets, data linkage activities are performed by NHS England, on CPRD’s behalf. The data CPRD receives from NHS England is, however, similarly de-identified.
CPRD has legal support from the Health Research Authority (HRA) Confidentiality Advisory Group (CAG) under section 251 of the National Health Service Act 2006 to cover the separate collection and processing of patient identifiers by NHS England for secure dataset linkage, meaning that individual patient consent for the collection and processing of these identifiers is not required.
However, if you do not want your GP to share the de-identified, clinically coded data from your electronic health record with CPRD, you can opt out.
I live in England
CPRD complies with both Type 1 Opt-Outs and the National Data Opt-Out Policy:
Type 1 Opt-Outs:
If you choose a Type 1 Opt-out, your GP will not share your data for research and planning. However, NHS England will still be able to collect and share your data from other healthcare providers, such as hospitals.
To choose a Type 1 Opt-Out, complete the opt-out form and return it to your GP. Only your GP Surgery will be able to process a Type 1 Opt-Out form. The form is available via the NHS here: Opt out of sharing your health records
National Data Opt-Out (NDO) Policy:
The National Data Opt-Out Policy allows patients receiving health and social care in England to choose if they do not want their confidential patient information to be used for purposes beyond their individual care and treatment – for example, for research and planning purposes.
Where an NDO has been set by or on behalf of a patient, it means that NHS England, and other health and care organisations covered by the Policy, must make sure that the patient’s opt-out choices are respected and must not share that patient’s confidential patient information with other organisations for research and planning purposes, except for where this is required by law or where a limited number of exemptions apply.
You can make your choice via the NHS here: Choose if data from your health records is shared for research and planning
I live in Scotland, Wales or Northern Ireland
The National Data Opt-Out Policy does not apply to patients registered at practices in Scotland, Wales or Northern Ireland. Please see information about Type 1 Opt-Outs above or discuss with your GP practice.
What happens if I opt out?
CPRD honours all Type 1 Opt-Outs, in that we do not receive any new data for patients once their Type 1 Opt-Out form has been successfully processed by their GP.
Similarly, CPRD honours all NDOs in that we do not receive any new data for patients once their NDO has been registered.
Once a patient opts-out, their data will be excluded from future CPRD database releases. This will be the case even where a patient subsequently opts back in or withdraws their previous opt-out. This allows CPRD to ensure consistency of approach regardless of which GP software provider a contributing GP practice uses and reduces data quality issues arising from gaps in patients’ records that may affect research results.
As the data CPRD receives is de-identified, it is not possible for CPRD to tell definitively which patients have opted out and we rely on GP practices to inform us via their software providers. This means that, while we stop receiving any new data from the point the opt-out is registered, there can sometimes be a delay in fully removing opted-out patient records from the latest versions of the CPRD databases. We are seeking ways to reduce the number and extent of any delays in fully implementing patient opt-outs.
What is the impact of opting out?
Opting out of sharing your health data will not affect the care that you receive.
However, public health services in the UK depend on the data collected by CPRD to monitor drug safety and safeguard public health. Health research for the public benefit also relies on the use of patient-level data and, if large numbers of patients choose not to share their deidentified health data for research, the health data within the CPRD databases will not truly represent all those living in the UK. You can find out more about the potential impact of opting out of sharing your health data for research here: What’s the potential impact of the national data opt-out?
In addition, once a patient opts out, they will not be invited to take part in any clinical research studies being supported by CPRD.
Can I opt out of specific studies?
Due to the de-identified nature of the data received by CPRD, along with the data collation and processing mechanisms through which these data are received from contributing GP practices, CPRD is not able to offer a study-specific opt-out process.
If you have any concerns about how CPRD data benefits public health, please get in touch with enquiries@cprd.com or dataprotection@mhra.gov.uk.
Further Information
CPRD supports the Understanding Patient Data initiative that aims to make uses of patient data more visible, understandable and trustworthy, for patients, the public and health professionals.
There is also information on what choices you have relating to how your data are used beyond your individual care on the Understanding Patient Data website: Choices in how your data is used beyond individual care.