A deadline of June 23rd for patients to opt out of their medical records being shared by their GP practice with NHS Digital for research and planning use is to be extended.

Under the proposed system – the General Practice Data for Planning and Research – information from surgeries in England on 55 million patients will be added to an NHS Digital database.

The collected data includes sex, ethnicity, sexual orientation, diagnoses, medications and information about a patients’ physical, mental and sexual health. It does not cover names and addresses – except for a postcode which is replaced by a unique code generated by de-identification software.

Simon Bolton, head of NHS Digital, said all collected data would be protected or pseudonymised before it leaves the GP “to ensure patients cannot be directly identified”.

NHS Digital said that the data would only be accessible to organisations “which will legitimately use the data for healthcare planning and research purposes, and they will only get the specific data that is required”.

It added that the information would never be used for insurance or marketing purposes, promoting or selling products or services, market research and advertising and any requests for data would be “scrutinised by NHS Digital against stringent criteria”.

But the ‘digital scrape’ is being criticised by privacy campaigners who claim it will be difficult to find out who ultimately sees the data, due to the NHS’ ‘opaque’ commercial relationships.

The British Medical Association and the Royal College of GPs have also expressed concern “about the lack of communication with the public”, urging NHS Digital to “take immediate action to run a public information campaign” in a joint letter.

The system was due to begin on July 1st, but the date has now been pushed back to September 1st after the outcry. The opt out deadline of June 23rd is to be extended – to a date not yet announced.

How you can stop the NHS from sharing your medical records with third parties

If you don’t want to have your GP medical records on the new database, search online and print off a ‘type 1 opt-out form’ – or ask your GP for one. Return the completed form to your GP practice.

Alternatively, call NHS Digital on 0300 303 5678 between 9am and 5pm Monday to Friday and ask for one to be sent to you. (Calls to 0300 numbers cost up to 10p per minute from landlines, and up to 40p per minute from a mobile.)

Return the form to your GP practice (watch out for news of the new deadline) before NHS Digital starts collecting the data on September 1st. If you miss the new deadline, you can still opt out, but this only stops new information on your records being added to the database – it won’t erase information already there.

For more information on the medical data sharing visit:

https://www.nhs.uk/your-nhs-data-matters/

https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/how-we-look-after-your-health-and-care-information/your-information-choices/opting-out-of-sharing-your-confidential-patient-information