Patients urge caution over GP data sharing

Patient consent for GP data to be shared for research and commissioning should not be taken for granted, a pressure group has warned.

Patient data: campaigners want opt-in system for sharing information
Patient data: campaigners want opt-in system for sharing information

NHS England announced last week that it was leafleting every household in the country with information on the care.data programme, which will extract huge amounts of information from GP IT systems.

The leaflets included details on how patients can prevent their information being shared, and patients with concerns have been told to contact their GP practice if they want to withhold data.

But pressure group Patient Concern said the system of consent should be completely overhauled with GPs informing all their patients of the new programme, and then inviting patients to opt in if they wish.

Meanwhile, a group of medical research charities and other research organisations have launched an advertising campaign urging patients not to block release of their data to the new care.data programme being operated for NHS England.

The British Heart Foundation, Arthritis Research UK, Cancer Research UK, The Association of Medical Sciences, and the Wellcome Trust, among others, are behind the advertising campaign, and umbrella body the Academy of Medical Research Charities insisted patients could choose whether to share their data or not under the scheme.

In a statement, Patient Concern said: ‘[NHS England is] assuming that everyone has agreed to allow researchers access to their medical records, unless they visit their GP to object. The assumption is obviously false and a plot to deter objectors.

‘The Information Commissioner’s office has just re-stated GPs’ legal duty to ensure all patients are properly informed on the risks and benefits of what is happening.

‘They therefore need to contact every patient and inform them of the situation. Meanwhile opt everyone out of the system. Only remove the opt-out when they get a call, email, letter or patient visit authorising release of their records from the surgery.’

An NHS England spokeswoman said: 'Researchers and other analysts have been able to apply for pseudonymous data from hospital episode statistics, and related datasets for many years.  In the future we want this to be extended to pseudonymised GP data for the benefit of NHS patients.

'Only approved organisations can access pseudonymised data.  Organisations must submit applications to the HSCIC specifying the details of their project, the purpose for requesting the data, how the data will be used and what the outputs of their analysis will be. The application process also requires them to provide assurance that appropriate information security is in place.'

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