After NHS app data controversy, plans to share patient records with third-parties revealed


As reported by the Financial Times, the database will scrape medical histories of millions of NHS patients, and will house sensitive information such as details on mental and sexual health, criminal records as well as abuse.

Details on sexual orientation, ethnicity, immunisations and more will also be collected.

The database pools together medical records from every patient in England that is registered to a GP practice.

And the sensitive information housed in the NHS database will reportedly be available to academic and commercial third parties for purposes such as research and planning.

READ MORE: New NHS vaccine passport registers more than 1m new users

If you don’t want your details being included in the database, then you only have a few weeks left to opt out. Patients have to download this form from an NHS website, fill it out and then hand it to their GP by June 23.

In a post online outlining this data collection, NHS Digital said: “Data will only be made available in response to appropriate requests from organisations which are approved following independent scrutiny by our Independent Group Advising on the Release of Data.” In a further post, NHS Digital went into more detail about ‘who we share patient data with’ and the types of organisations that may be able to put in requests for access to such information.

Besides the Department of Health and Social Care, Public Health England and NHS England “research organisations, including universities, charities, clinical research organisations that run clinical trials and pharmaceutical companies” were also highlighted. However, the organisations that “likely need access to” patient data “may not be limited to” the ones that were mentioned.

But the plans have sparked controversy, with privacy campaigners raising “serious concerns” about its legality.

Speaking to the FT, Cori Crider, the co-founder of digital rights campaign group Foxglove, questioned what types of organisations would have access to the data.

Crider said: “Is it pharma companies? The health arm of Google Deepmind? If you ask patients whether they want details of their fertility treatment or abortion, or results of their colonoscopy shared with [those companies], they’re not going to want that”.

The NHS Digital website added that the ‘General Practice Data for Planning and Research’ will not collect patients’ names or addresses.

Data that could be used to identify a patient (like NHS Number, date of birth, full postcode) will be replaced with unique codes.

NHS Digital did, however, say this code could be converted back into data that identifies a patient in specific circumstances where there is a “valid legal reason”.

NHS Digital said: “This process is called pseudonymisation and means that patients will not be identified directly in the data. NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify patients in certain circumstances, and where there is a valid legal reason.”

Speaking to, an NHS Digital spokesperson said: “Patient data is already used every day to plan and improve healthcare services, for research that results in better treatments, and to save lives.

“During the pandemic, data from GPs has been used to benefit millions of us: helping to identify and protect those most vulnerable, roll out our world leading vaccine programme, and identify hospital treatments which have prevented people dying from covid.

“We have engaged with doctors, patients, data, privacy and ethics experts to design and build a better system for collecting this data. The data will only be used for health and care planning and research purposes, by organisations which can show they have an appropriate legal basis and a legitimate need to use it.

“We take our responsibility to safeguard patient data extremely seriously. Researchers wanting to access this data will need each request to be approved by the Independent Group Advising on the Release of Data (IGARD) and a GP Professional Advisory Group (PAG), with representatives from the British Medical Association and the Royal College of General Practitioners.”

Published at Thu, 27 May 2021 17:31:44 +0000

After NHS app data controversy, plans to share patient records with third-parties revealed


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