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GP leaders concerned over giant research database

RCGP says patients have not been given enough information about plans to use their patient records for research

Ingrid Torjesen

Thursday, 13 February 2014

The Royal College of GPs (RCGP) believes that patients have not been given enough information about plans to allow researchers access to their medical records via the giant database care.data.

Care.data will be rolled out in England from April and allow researchers access to non-identifiable GP patient records. Researchers will be able to use the database to assess diseases, examine new drugs on the market and identify infection outbreaks, as well as monitor patient care. Similar information is already available about patient care in hospitals.

RCGP honorary secretary Professor Nigel Mathers said: "We are very concerned that, with just seven weeks to go before the national roll out, the public have not been properly informed about the benefits of and the safeguards surrounding the care.data programme.”

Even many GPs were uncertain about the safeguards that will apply, he added. "The inevitable result of the failure to make the case for the scheme is the crisis of public confidence that we are now seeing.

"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.”

Professor Mathers said that the RCGP supported the care.data initiative in principle because it believed that it offered the potential to improve the quality of care for patients but that GP and patients needed their concerns addressed urgently to restore public confidence in the scheme.

"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,” he said.

"It is vital that patients and doctors are as informed and as confident as they can be in the scheme, and in the safeguards in place to ensure patient confidentiality, before it is introduced across England.”

NHS England has told the RCGP that the Health and Social Care Information Centre does not make a profit from providing data to other organisations and that data will not be sold to insurance companies for the purposes of insurance and that confidential data can only be disclosed where allowed by the law.

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