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Doctors urged to adopt default opt-out approach to care.data scheme

A patients' group has urged doctors to automatically opt their patients out of the new 'care.data' scheme until the patients give consent for the disclosure of their medical data.

The Patient Concern campaign group said that patient trust in their GPs would be undermined if doctors shared the medical data stored on their systems without consent from patients.

"All GP surgeries participating in the pilot scheme must automatically opt out all their patients," Patient Concern said, according to a report by Healthcare Government Computing. "Then only remove that opt-out when patients give permission."

Data protection laws do not prevent doctors from adopting the approach recommended by Patient Concern, the Information Commissioner's Office (ICO) has said, providing certain conditions are met.

"If GPs choose to opt out all of their patients, then that is an issue for them and NHS England – the Data Protection Act does not prevent it," said strategic liaison group manager at the ICO, Dawn Monaghan, according to a report by health news website Pulse. "However, the Data Protection Act would still require patients to be given a full explanation of the options open to them, and why the GP has chosen to opt them out."

However, the Health and Social Care Information Centre (HSCIC) was given power to compel the gathering of certain patient data gathered from GP surgeries in England under the 2012 Health and Social Care Act. The data is to be added to the patient data already gathered by hospitals in a new database, known as 'care.data', unless individuals opt out.

Data stored in the database would be used to improve health services, but the HSCIC would also have the power to grant third parties access to the data it collects for certain purposes and under certain circumstances, including for medical research, subject to certain privacy safeguards.

Even though the care.data scheme is being driven by the UK government and NHS England and the Health and Social Care Act compels data sharing, it is GP surgeries that are responsible for ensuring that their disclosure of patient records under the scheme adheres to UK data protection laws. This means ensuring patients are suitably notified about the ways in which their data could be processed under the scheme and responding to any requests to be opted out.

Dr Richard Vautrey, deputy chairman of the General Practitioners Committee (GPC), said the burden of informing patients about the care.data scheme should not rest with GP surgeries.

"As far as the ICO position is concerned that is technically correct but it puts a huge workload burden on practices, which is not funded, and also places the risk in relation to delivering effective communication to every single patient on to the practice," he said, according to a report by GP Online.

The care.data programme was scheduled to become operational earlier this year but its implementation was postponed amidst concerns about patient awareness of the scheme and their consent to the use of their health data

NHS England has now announced the areas of the country in which the care.data scheme will be piloted.

"The pathfinders will be supported in testing different types of communication with patients in those areas, explaining the benefits and risks of data sharing, and making clear their right to opt out from having their confidential information shared for indirect care," NHS England said.

"As part of the pathfinder stage, a variety of communications will be tested with patients which will include an individually addressed letter sent directly to every individual or household from their pathfinder GP surgery, a leaflet and other explanatory materials, as well as e-mails and texts where the surgery also uses these channels," it said.

NHS England stressed that the introduction of the Care Act earlier this year, means that the data collected as part of the care.data initiative "cannot be used for purely commercial purposes such as setting insurance premiums". It said the data would be used to "create a national picture of health patterns so commissioners can study issues such as diagnosis, waiting times and patterns of illness or disease".

Tim Kelsey, NHS England national director for patients and information, said: "We have heard, loud and clear, that we need to be clearer about the care.data programme and that we need to provide more support to GPs to communicate the benefits and the risks of data sharing with their patients, including their right to opt out.”

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