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“Patients deserve to know how and under what circumstances their personal data may be used”

The Government has published its response to the public consultation into the National Data Guardian for Health and Care’s and Care Quality Commission’s data security reviews.

Better Security, Better Choice, Better Care says the government will adopt the key recommendations on data security.

Here’s the reaction:

Dr John Chisholm, BMA medical ethics committee chair, said:

“The Government’s response to the public consultation on the data security and opt-out model reviews by the National Data Guardian and Care Quality Commission includes a welcome focus on cybersecurity and cyber-resilience, and on the implementation of more suitable data security standards. There are many potential benefits in sharing data for medical research and improving clinical care.

“However, doctors have serious concerns about the removal of patients’ right to opt out of having their details sent from their GP surgery to NHS Digital, without first putting in place the necessary protections and guarantees about how this information will be used.

“The current arrangement between NHS Digital and the Home Office, in which the Home Office can request confidential patient information for immigration purposes, is undermining patient trust in how their confidential information is used.

“This arrangement between the Home Office and NHS Digital adopts a lower ‘public interest’ threshold for sharing confidential data than is expected by the General Medical Council.

“Patients deserve to know how and under what circumstances their personal data may be used. The BMA believes there needs to be a higher threshold for releasing information from NHS Digital to the Home Office, and independent oversight of disclosures before the removal of the opt-out.

“If patients don’t have confidence in the system, not only does it damage the doctor patient relationship, there is also a real risk that some will be put off visiting their GP, which could have serious public health implications.

“We are currently in ongoing constructive discussions with the government and hope we can reach an agreement that is in the best interests of patients.”

RCP president Professor Jane Dacre said: 

“I welcome the government’s adoption of both the Care Quality Commission and National Data Guardian recommendations on patient data sharing and security, and increased efforts towards communicating the benefits of data sharing.

“Patients need to know that the information they share with health professionals about their care will be protected and used to support their treatment, and the actions the government are taking will support stronger security standards and data protection.

“We also support the increased opportunities patients will have in future to know more about the way that their shared data has been used with their consent.”

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