Sharing GP data – advice for the public regarding opt-out. Date extended to 30.09.21

Posted by: Flora - Posted on:

New GP Data for Planning and Research (GPDPR) Programme was due to go live on 1 July 2021. It will replace the General Practice Extraction Service (GPES), which has operated for over 10 years and now needs to be replaced. The deadline for health and care organisations to comply with national data opt-out policy is now 30 September 2021. It has been extended to enable health and care organisations to focus their resources on the coronavirus (COVID-19) outbreak.

NHS Digital, as the national custodian for health and care data, has responsibility for standardising, collecting, analysing, publishing, and sharing data and information from across the health and social care system, including general practice. NHS Digital has engaged with doctors, patients, data and governance experts to design a new approach to collect data from general practice that:

  • reduces burden on GP practices
  • explains clearly how data is used
  • supports processes that manage and enable lawful access to patient data to improve health and social care

There has been some national media coverage about the introduction of the new arrangements under General Practice Data for Planning and Research (GPDPR) and the data sharing of patient records. There is some NHS Digital advice for patients about the collection of GP data that may help patient understanding of how the information is shared in a non-identifiable way and will only be used for research. There is also a short video on YouTube that explains how the data will be used.

Can Patients opt-out?

For patients who do not want their identifiable patient data (personally identifiable data) to be shared outside of your GP practice for purposes except for your own care, you can register a Type 1 Opt-out using these forms .

Any patients who do not currently have a Type 1 opt out in place and wish to opt out before GPDPR takes effect must register with practices by 30th September 2021 to avoid the extract by NHS Digital. After this date, the Type 1 opt out would still be respected, however, this would be on new data extracted post the new date and would not apply to data that has already been extracted.

It is important to note that the Type 1 opt-out won’t apply where there is a legal requirement for GP practices to share data with NHS Digital.

Our Privacy Notice is currently being updated to reflect the forthcoming changes.