GPs voices concerns on patient data

Plans to make UK patient data available for use in medical research have been badly handled, according to an association representing general practitioners.

The Royal College of General Practitioners (RCGP) is the latest organisation to raise concerns about the NHS ‘care.data’ programme, which has been widely criticised for playing down the risks of individuals having their medical records made public.

The RCGP says it still believes the programme can improve NHS care and help research, but says time is running out to properly inform the public about the risks, safeguards and their rights.

The scheme will be launched on 1 April, and everyone registered with the NHS has until then has the option of opt out of the system.

An individual’s date of birth, full postcode, NHS Number and gender will be used to link records in a secure system, but will not include a name. A new record will then be created, which the NHS says will not contain information that identifies an individual.

The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules. However many experts say that these records could easily be used to identify someone, and many say that these risks have been downplayed.

RCGP Honorary Secretary Professor Nigel Mathers warned of a ‘crisis of public confidence’ in the system, adding: “We urgently need a renewed national push by the authorities to ensure that patients are fully informed, in clear terms, about the benefits of the scheme, what their rights are, and what their rights to opt out are.”

The College says it remains supportive of the initiative in principle, as it could help the NHS improve care for patients and to better prepare for outbreaks of infectious disease, such as flu, through sharing anonymised data.

But Professor Mathers added: “It would be a tragedy if something that could have enormous benefits for patient care falls at the first hurdle because of a failure of communication.”

Patient data will be classified on three levels of sensitivity and detail – green, amber and red. So-called amber data will be made available under a legal contract, and only to approved analysts for approved purposes. The contract stipulates how the data must be stored and protected, and how the data must be destroyed afterwards.

The government says universities, think-tanks and data analytics companies and pharmaceutical companies will make use of this data for research purposes, and the availability of the database to researchers could also eventually help in the development of new drugs.

NHS England and the Health and Social Care Information Centre, the NHS organisation handling the data will charge a fee for access to the database, but say the health service will not make a profit from providing data. Information will not be sold to insurance companies for the purposes of insurance and confidential data can only be disclosed where allowed by the law.

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