NHS’ lack of communication with patients over plans to share their data is ‘astonishing’, warns Chartered Institute for IT

Most of the 55m patients whose GP records will soon be shared with third parties will be unaware of the plan due to a ‘total lack of engagement’ by NHS Digital, the professional body for the IT industry warned today.

The absence of a public information campaign, or letters sent to individuals explaining how their data will be used will erode public and professional trust in digital aspects of the health service, according to BCS, The Chartered Institute for IT. 

NHS patients’ GP information will be moved to a new database and shared with researchers, academics, and other third parties - unless people opt out by 23 June. 

Dr Philip Scott, Chair of the Health and Care Executive at BCS, The Chartered Institute for IT said: “NHS Digital don't seem to have learned the lessons of the care.data fiasco. This is well intentioned and has great opportunities to progress research, but the total lack of engagement to build the necessary public and professional trust is astonishing."

Dr Bill Mitchell, Director of Policy at BCS, The Chartered Institute for IT said: “Ethical use of health data benefits the whole of society - but it is difficult to know precisely who is doing what with this data and the process should be far easier to understand and more visible to the general public. 

“In fact most of the millions of people affected will be unaware that this is happening, even if there will be benefits to all of us from the research that NHS Digital is facilitating.

“When new terms and conditions are introduced by messenger apps, at least they pop up on our phones and gives us a chance to review them, even if they are legally complex. Nothing as direct has happened here in terms of advertising and campaigning.

“To really gain public trust and demonstrate commitment to ethical and professional data use, organisations need to wholeheartedly embrace openness and transparency, which is especially true for the NHS. There must be a robust mechanism for us to check what’s actually going on with our data and to be told very clearly whenever there are significant changes to how our data is shared, if that might give us pause for thought.” 

The patient information is being moved to a new database which will allow the NHS to ‘decide what new health and care services are required in a local area, inform clinical guidance and policy and supports researching and developing cures for serious illnesses.’ Opting out after the deadline means no further data will be shared.

GP surgeries have been encouraged to include the information on their websites and other material, and the update news is available on the NHS Digital website.

In a statement NHS Digital said that: “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.” 

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