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NEWS: Plea for delay on practice data sharing project

GP leaders have called for a national campaign to explain new proposals for sharing data from general practices – amid growing concern about public ignorance of the project.

One group of practices, in Tower Hamlets, London, is to refuse to cooperate with the NHS Digital project until the public is better informed, the Guardian reported today. NHS Digital had negotiated the data deal with medical organisations, allowing pseudonymised data to be collected from practices for research. Under the arrangement, individual patients can choose to prevent their data being collected. Data collection is due to begin on 1 July.

The Guardian quotes an email from Dr Osman Bhatti, chief information officer of NHS North East London, sent on Monday. The email states: “NHS Digital have not publicised this in the way that I would have expected. If you feel that you have not had enough time to inform your patients and that they have had a reasonable time to object, then this sharing agreement should not be enabled.”

One Tower Hamlets GP Dr Ameen Kamlana said: “There’s an immense amount of good that can come from responsible and secure use of public data, public health records. However, our issue here with this particular proposal is that it’s been rushed through. There has been no public information campaign to inform the public about the plans, and in order to allow them to decide for themselves whether they are happy about it.

“Essentially what’s being asked for here is people’s entire health record, so everything that we’ve coded in people’s records from the time of their birth to the time of their death, including their physical, mental and sexual health, including their health-related concerns with family and work and including their drug and alcohol history. Essentially all your most intimate private details of your life is being asked to be handed over and we were concerned that the public aren’t aware of what’s being done.”

According to NHS Digital’s project plan, patients should opt out by 23 June – but yesterday the Royal College of GPs backed concerns that the public does not know enough about the project.

College chair Professor Martin Marshall said: “The College supports the principle of improved sharing of data for important healthcare planning and research, but it is critical that this is transparent and that patients have confidence and trust in how the NHS and other bodies might use their information. The job of informing the public must not be left to busy GPs, especially at a time of extreme workload pressures and focus on the COVID-19 vaccination programme, so we have written to NHS Digital urging them to undertake greater communications with the public about this new collection and their options for opting out.”

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