Patient Record Sharing: Clearing up the Confusion

Published 11/06/2021   |   Last Updated 11/06/2021   |   Reading Time minutes

In the past few weeks there’s been a lot of media focus on plans for GP patient records to be shared with third parties. These changes do not apply in Wales but there has still been a lot of confusion about how they affect patients not only in England, but also those across the Welsh border who access English health services. This article aims to clear some of the fog and help make sense of the data sharing implications.

Who is making the changes and what exactly are they?

NHS Digital is responsible for collecting, standardising and sharing data across the health and social care system in England. This data includes GP patient records. A service called the General Practice Extraction Service (GPES) was used over the past 10 years and collected data that was “effectively anonymised”, so that it doesn’t reveal an individual’s identity. It also collected patient-identifiable data (for example name, date of birth or postcode) when it was permitted by law or supported a direct benefit to patient care.

NHS Digital is now looking to replace the service with the General Practice Data for Planning and Research (GPDPR). This service is more centralised and will use a process called pseudonymisation. This means that patients will not be identifiable in the data but NHS Digital can convert unique codes back to data that could identify patients, for instance when there is a valid legal reason to do so.

What kind of data is being collected?

Data including diagnoses, symptoms, observations, and test results will be collected, along with data on sex, ethnicity and sexual orientation. NHS Digital also say that data about the staff that have treated patients may be collected.

Names and addresses will not be collected (except for postcodes, in a coded form). Details of conversations with doctors and nurses or written notes will also be exempt. A full list of all data that will be collected can be found on the GPDPR webpage.

Can patients opt-out?

Yes, patients can opt-out of the service by 1 September 2021, the official start of the collection. Patients can still choose to opt-out after this date, however the data collected up to that date will still be held by NHS Digital. The new system was originally planned to begin on 1 July 2021 but on 8 June 2021 NHS Digital announced they had deferred the start to 1 September 2021. Health and care organisations have until 30 September 2021 to comply with the national data op-out policy.

Are these changes happening in Wales?

In short, no. However, the issue is slightly more complicated issue for patients in Wales using an English GP practice, who are affected. In addition, as the data has been collected over the past 10 years, there’s going to be some people who may have moved from England to Wales in that time. Any data collected during their time living in England will still be collected, if they were registered with an English GP. However, these patients have the same right to opt-out as those living in England, and this opt-out continues as long as someone chooses to keep it in place.

Does patient data-sharing take place in Wales?

Yes. Organisations from NHS Wales do share patient information for research and planning purposes. For example, the SAIL Databank (Secure Anonymised Information Linkage) is an internationally recognised databank of anonymised and encrypted data about the population of Wales, based at Swansea University. The databank was highlighted as a world-class flagship for secure storage in a recent statement by the Minister for Health and Social Services Eluned Morgan, MS. SAIL is supported by the Welsh Government and funded by Health and Care Research Wales.

The data collected by SAIL is used in projects that aim to improve patient care and improve health and well-being. As the data is entirely anonymised and cannot be linked to identifiable patient information, Welsh patients can only opt-out by making a request to their GP.

Other examples of data sharing in Wales include the Patient Knows Best scheme and the Welsh Community Care Information System.

Further information about the planned changes and advice for the public can be found on the NHS Digital website. A statement by the Minister for Health and Social Services, Eluned Morgan, MS regarding patient data sharing can be found on the Welsh Government website.

Article by Božo Lugonja, Senedd Research, Welsh Parliament