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Patients still in the dark about care.data, warn doctors’ leaders

With only weeks to go before roll-out, BMA tells NHS England to raise its game

Caroline White

Monday, 17 February 2014

With only weeks to go before roll-out, patients are still in the dark about the implications of the government’s care.data plans, doctors’ leaders have warned.

NHS England must raise its game and take action to ensure that the public is better informed, says the BMA.

The warning comes as the results of an online YouGov poll of 1,100 adults, commissioned by consumer advocacy group, SumOfUs.org show widespread distrust of the government’s data-sharing initiative to extract patient information from clinical records to support commissioning, planning and research.

NHS England has said that the data, which will primarily be used to inform commissioning, could also be used by charities, think tanks and universities for research purposes. Commercial companies will also be able to apply to use it, for a fee, it says.

But two thirds (65%) of the 1165 people who responded to the online survey on February 12 and 13, don’t want their data to be used by commercial companies.

Dr Chaand Nagpaul, Chair of the BMA’s General Practitioner’s Committee, said the doctors’ union is “deeply concerned with the government’s public information campaign for care.data.”

He said: “With just weeks to go until the uploading of patient data is scheduled to begin, patients remain inadequately informed about these proposals. As shown in a recent survey only 29% of the public recall receiving a leaflet, while 45% remain unaware of plans to share their data.”

Feedback from GPs across the country indicates that large numbers of patients have not received any information about the plans, while others were worried about who would have access to it and how it would be used, he said.

The BMA backed the principle of using anonymised data to plan and improve the quality of NHS care, but it had to be done with the support and consent of the public, he said.

“The public awareness campaign has clearly not worked, and today we call on the government to ensure public trust in the system by properly informing the public about care.data before the currently planned data extracts commence, and produce evidence this has been achieved prior to uploads taking place,” he demanded.

The BMA was in talks with NHS England about how to proceed, he said.

SumOfUs member and retired GP Dr Ron Singer added: “The government need to explain who is going to get access to this data, exactly for what purpose and for how much. Patient/doctor confidentiality shouldn’t be open to influence by corporate lobbyists and put at risk all for a fast buck.”

Following concerns raised by its members about what to tell patients, the Medical Protection Society has today reminded GPs that their primary responsibility at this stage relates to the fair processing of information.

Practices must ensure that they engage with the process and follow the guidance* issued by NHS England, it says, as this “will put them in the best position in the event that a complaint is raised.”

*Guidance from NHS England:
Frequently asked questions - Care.data guide for GP Practices 
Additional Guidance for GP Practices on Care.data

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