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Patients will be able to stop their data being shared – Hunt

The Caldicott review into information governance has called for a balance to be struck between sharing personal information and protecting individuals’ confidentiality.

The report, ‘Information: to share or not to share’, recommends all medical professional justify the purpose of any use or transfer of patient data, and should not use personal confidential data unless it is absolutely necessary. However the duty to share data can be as important as the duty to protect confidentiality.

It states: “People using health and social care services are entitled to expect that their personal information will remain confidential. They must feel able to discuss sensitive matters with a doctor, nurse or social worker without fear that the information may be improperly disclosed. These services cannot work effectively without trust and trust depends on confidentiality.

“However, people also expect professionals to share information with other members of the care team, who need to co-operate to provide a seamless, integrated service. So good sharing of information, when sharing is appropriate, is as important as maintaining confidentiality. All organisations providing health or social care services must succeed in both respects if they are not to fail the people that they exist to serve.”

Responding to the report, health secretary Jeremy Hunt said sharing patient data held in GP records with the Health and Social Care Information Centre (HSCIC) had enormous potential for improving care, but must be based on a relationship of trust between the NHS and the patient.

Any patient who does not want their personal data to be shared will have their wishes respected, and data that has already been shared can be removed at their request. The BMA, NHS England and the Royal College of GPs are working to raise public awareness of patients’ right to control their own data.

Dame Fiona Caldicott, who led the independent panel of experts on the review, will chair a panel to oversee and scrutinise implementation of the review’s recommendations. The Government will make a full response in the summer.

Hunt said: “The Caldicott review has been about striking the right balance between sharing people’s health and care information to improve services and develop new treatments while respecting the privacy and wishes of the patient.

“If patients are to see the benefits of these changes we must respect the wishes of the small number of people who would prefer not to share this information. I firmly believe that technology can transform the quality of healthcare in this country, but we must always respect the fact that this is very personal information about an individual.”

Mike Farrar, NHS Confederation chief executive, said: “With every piece of patient information, the NHS has two responsibilities – to maintain confidentiality and to make sure that information works hard to improve patient care. Many staff feel like they're caught between a rock and a hard place in balancing these duties, so today's report provides some clear and welcome guidance on the best way to walk that tightrope.

“For both patients and the health service, under-sharing can be as harmful as over-sharing – patients must submit the same details over and over again, wasting their time and that of clinicians, and services can't plan or provide the right level of care if they don't know their users' needs.

“There is a clear need for the NHS to strike the right balance between sharing and protecting patient information.”

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