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500 million patient records shared with researchers

By Gareth Iacobucci

A fresh row has broken out over the use of patient records in research, after it emerged that 500 million records have been shared with researchers funded by Dr Foster Intelligence.

Pulse first revealed details of the release of data to the Doctor Foster Unit at Imperial College via the Secondary Uses Service in August last year.

Now data obtained by Computer Weekly shows that the Dr Foster Unit has received 500 million health records - almost 300 million of which are patient-identifiable – since 2007. They included 180 million inpatient and day cases, and 285 million files with patient identifiable information such as patients' dates of birth, postcodes and NHS numbers.

The records include information on almost every stay by patients in NHS hospitals in England, plus visits to A&E.

Patients can only opt out of the system by making a formal request under the Data Protection Act on grounds that the release of information may cause them distress.

Connecting for Health is midway through a 12-week consultation on how the NHS should use patient data for ‘secondary uses', including medical research, disease surveillance, screening and needs assessment.

The Government has broadly backed the use of patient data, but the BMA has expressed concern at the scale of the programme.

Dr Grant Ingrams, chair of the GPC IT subcommittee, said: ‘You shouldn't have some huge aggregated lump of patient-identifiable data for people to go fishing in.

‘There has never been any true debate about the rights and wishes of patients with regard to their private information. We would be keen on an independent body asking the public what they want done with their data.'

Tim Kelsey, chair of the executive board of Dr Foster Intelligence, told Pulse no patient-identifiable data had been passed from the Dr Foster Unit to Dr Foster Intelligence.

‘Neither Dr Foster Intelligence nor any Dr Foster company has ever used – or had access to - confidential patient data in its work,' he said. ‘Anonymised data is essential to helping the NHS understand how it can improve the quality of its provision.'

Dr Foster Intelligence is a 50:50 public-private partnership launched in 2006 between the NHS Health and Social Care Information Centre and Dr Foster, a commercial provider of healthcare information.

500 million patient records shared with university researchers

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