“Unacceptable” Lack of Transparency Around NHS Privacy Changes
The Brecon & Radnorshire Liberal Democrats have criticised NHS England’s imminent rollout of changes to the way that the identifiable personal and health data of patients registered with GP surgeries in England is shared with third parties.
From 1st July 2021, 55 million patients are due to have their health data held by GP surgeries added into NHS Digital’s new database that will be accessible to third parties, including for commercial purposes.
NHS Digital defends the new ‘General Practice Data for Planning and Research’ on the basis that it will improve public health planning and research by greatly expanding the potential of health data analytics and reduce burdens on GP practices in England.
Privacy and civil liberties campaigners have raised concerns about NHS Digital’s lack of transparency over who patient’s identifiable personal and health data will be shared with and the possibility that such data may be available to Google Health and DeepMind (two artificial intelligence services owned by Google parent company Alphabet Inc.) for the development of their commercial products.
Questions are also being asked about why patients will not be contacted with information about changes to the way that their personal data is to be handled. The Conservative UK Government says that all NHS GP clinics in England have been sent posters and flyers with information.
Data to be made available to third parties via the database includes information about each patient’s diagnoses; symptoms; observations; test results (including sexual health screenings); medications; allergies; immunisations; all referrals (including referrals to abortion clinics); and recall and appointment history. Data on sexual orientation will also be made available.
The changes will only apply to patients registered with an NHS England general practice. However, this does include some Welsh patients in border areas such as Powys and Monmouthshire who are registered with a practice in England.
Patients have until 23rd June 2021 to opt out, after this they will be unable to do so. Forms stating that “I do not allow my identifiable patient data to be shared outside of the GP practice for purposes except my own care”, can be obtained from and returned to GP surgeries.
Commenting, Welsh Liberal Democrat Councillor for Glasbury and Leader of the Welsh Liberal Democrats at Powys County Council, James Gibson-Watt said:
“It is unacceptable that NHS England and the Conservative UK Government are making this massive change to the way that the most sensitive personal data of millions of people is to be handled and shared with such little publicity and no direct contact with or consent from patients.
“I am sure that the vast majority of people attending GP appointments do so believing that identifiable personal data will not be made available beyond the GP surgery and NHS without their knowledge and explicit consent.
“Flyers or posters in surgery waiting rooms are simply not good enough.
“For this fundamental change to personal privacy and the relationship of patients and citizens to the NHS to be announced and pushed through in a few weeks with very little scrutiny or debate is shocking. At the very least, the implementation of this system should be paused, so that everyone affected can be given proper notice of the changes and how to give or withdraw consent. Doing so is vital for maintaining public trust in the way that NHS England handles our data.”
DIWEDD / END
Note:
NHS Digital, General Practice Data for Planning and Research (GPDPR), https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research#top, (Accessed 27th May 2021)
Financial Times, England’s NHS plans to share patient records with third parties, https://www.ft.com/content/9fee812f-6975-49ce-915c-aeb25d3dd748?accessToken=zwAAAXmtZ4gQkdOf7oEvaXVJztORXK6yXT3XSA.MEQCIE4w9Bx8kCBYdfx8SFJBcz89xdtM9U2B8fiqiFv5KsTOAiBrL6J7OsKDsbRInUKIdspoNpvDVroKGXVq40vVhmZJ6A&sharetype=gift?token=21c8b1c9-cf12-47d0-b57f-c138d04cbc41, (Accessed 27th May 2021)