Current situation
The current NHS Digital (NHSD) extract of GP data for Research purposes (known as the GPDPR) has been delayed due to NHSD wishing to review the way in which this data will be collected, to conduct more public involvement and information about the plans and change the way in which patients can opt out of the extract of their GP data.
Currently the only way to opt out is to complete a Type 1 opt out form and return this to the practice by the 1st September 2021. However, this extract will not be taken until the NHSD have changed the way it will take the data and respect the patient’s choice for using their data. NHSD are introducing the following changes to the opt out process which will mean that patients will be able to change their opt-out status at any time:
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- Patients do not need to register a Type 1 opt-out by 1st September to ensure their GP data will not be uploaded.
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- 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 someone registers a Type 1 opt-out.
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- The plan to retire Type 1 opt-outs will be deferred for at least 12 months whilst new arrangements are up and running and will not be implemented without consultation with the RCGP, the BMA and the National Data Guardian.
This means that you can opt out at any time in the future and NHSD will delete data that they already have taken for research purposes. The deadline of the 01/09/2021 has been delayed until a new system of opt out is developed and a specific date is not being set for collection of the data. Hopefully, moving forward, this process will be a simple centralised approach via the NHS app or NHS website to avoid paper form and administration work for your GP.
What’s next?
There has been some concern regarding the lack of awareness amongst the healthcare system and patients. It is recognised that strengthening of communication between these parties. The Department of Health and Social Care are developing an engagement and communications campaign, with the goal of ensuring that the healthcare system and patients are aware and understand what is planned, and can make informed choices. The public rightly look to and trust general practice and a centrally driven communication campaign with clear messages will seek to ensure that the introduction of this collection does not impose an additional burden on practices.
They are developing a strategy that will deliver:
- Listening – where stakeholders will be listened to and gather views on how best to communication with the profession patients and the public
- Consultation – a series of events where they can explain the programme, listen and capture feedback
- Demonstration – show how feedback is being used to develop and shape the programme
- Delivery – of an information campaign to inform the healthcare system and the public about the changes to how their GP data is used
Further information can be found on the following website: