Experts warn misinformation on NHS data sharing could scupper vital health research

Experts have warned that misleading information about a controversial plan to share GP patient data is unnecessarily fuelling fears among the public and putting life-saving research at risk.

It was recently announced that the General Practice Data for Planning and Research project which was due to start in July has been delayed until September. The announcement came following concerns raised about the project in relation to patient privacy as well as difficulties experienced by patients trying to opt out of the scheme.

A combined statement organised by Health Data Research UK from 120 experts and medical researchers, was issued earlier this week, warning “GP health data are crucial for the planning and provision of health services and to enable research discoveries that save and improve people’s lives.”

In a briefing organised by the Science Media Centre, Professor Cathie Sudlow, director of the British Heart Foundation Data Science Centre, said research into a number of diseases, including heart failure, arthritis, dementia and depression, was suffering because of limits on data sharing.

She went on to say that a “small but vocal minority” of campaigners were behind the “circulation of misinformation about this new and improved primary care data collection”.

When asked about GPs who have threatened to remove all of their patients from the scheme, Professor Sudlow said “There have been some GP practices who have by default set all of the patients in their practice to opt out.

“I don’t know how much consultation there has been with all the patients in the practice when that has happened, and the choice here should be with patients, not with their doctors.”

Professor Sir Rory Collins, of the UK Biobank project, said that half a million Britons had agreed to share their health information with the UK Biobank, but many are “astonished” that researchers are unable to access their GP records.

He added “The addition of GP data could substantially enhance the kind of research that can be done in UK Biobank – for example, conditions that typically lead to hospitalisation, such as depression, back pain and asthma, can be studied.”

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Posted by Tony May, Partner/head of Clinical Negligence Department, Chadwick Lawrence LLP (tonymay@chadlaw.co.uk ), medical negligence lawyers and clinical negligence solicitors in Huddersfield, Leeds, Wakefield and Halifax, West Yorkshire.

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