As you may have seen in the news, NHS Digital had planned to use GP data for research purposes known as the GPDPR, such as for pandemic planning and research into chronic diseases. Patients had until September 2021 to opt-out if they did not want their data to be used for this purpose. Following concerns about the process this has now been delayed and the deadline removed. NHS Digital wish to review the way in which this data will be collected, with more public involvement and clearer information about the way in which patients can exercise their choice.
Until recently, the only way to opt-out was for individuals to complete a Type 1 opt-out form and return this to their practice by 1st September. However, this extract will now not be taken until NHS Digital have changed the way it will take the data. NHS Digital are introducing the following changes to the opt-out process. Going forwards patients will be able to change their opt-out status at any time and:-
- Patients will not need to register a Type 1 opt-out by 1st September if they decide not to share their data for healthcare research.
- NHS Digital will create the technical means to allow GP data that has previously been uploaded to the system via the GPDPR collection to be deleted when a patient registers a Type 1 opt-out.
- The plan to retire Type 1 opt-outs will be deferred for at least 12 months until new arrangements are up and running. It will not be implemented without consultation with the RCGP, the BMA and the National Data Guardian.
This means that patients can opt-out at any time in the future and NHS Digital will delete any data that they already taken for research purposes. The deadline of September has been postponed until a new system of opt-out is developed. We hope this will be a simple, centralised approach via the NHS app or NHS website to avoid paper forms and administration work for your GP.
Together, these changes mean that patients can have confidence that they will have the ability to opt-in or opt-out of the system, and that the dataset will always reflect their current preference. NHS Digital intend to ensure it is easy for patients to exercise their choice. Should they choose to opt-in, the data will only be used for the purposes of improving health and care – such as the rapid roll out of the Coronavirus vaccine. NHS patient data is not for sale and will never be for sale.
The NHS Digital website provides further information: