Patients opting out ‘will damage new health service data mining scheme’

MEDICAL charities have warned that it would be “enormously damaging” if patients decided to opt out of the new NHS data mining scheme.

The new data pool, which will be collected from GP records from surgeries across England, is “like a jigsaw” and would be incomplete if people choose to opt out, they said.

The central database will enable experts to assess diseases, examine new drugs on the market and identify infection outbreaks, they added. Throughout January every home in England will be sent a leaflet about the major changes to the way personal information is stored by the NHS.

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The care.data programme will see patient records held centrally, with non-identifiable data being extracted and used to assess services and for research.

Concerns have been raised about the prospect of keeping all of the information in one place, with campaigners saying that it could lead to privacy problems and data breaches.

Patients who do not want their information to be shared need to contact their GP practice within a month. Data gathering will begin in spring.

But leading medical research charities, including the British Heart Foundation, Arthritis Research UK, Cancer Research UK, Diabetes UK, the Academy of Medical Sciences, the Medical Research Council and the Wellcome Trust, said that while they “cannot guarantee that the data will be 100 per cent safe” they stressed that it was of “fundamental importance” for people to allow their records to be included in the scheme.

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Dr Peter Weissberg, medical director at the British Heart Foundation (BHF), said: “We’re worried that some people might think, ‘this is a bit dodgy, I’m going to default out of this’. And if they do that, that will have enormously damaging effects on our ability to run the health service and to do good research in the future.”

He added: “What this proposal is trying to do is make the data that the researchers need – and only the data they need, not personal details – to be able to make advances at the speed with which we need to make them.”

Last year, public sector officials launched the Leeds Innovation Health Hub to help attract international investment in the city.

One of its aims is to look at how “big data” can be transformed into useful information to help patients and healthcare providers.