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Case for care.data poorly publicised

RCGP calls for dramatically better efforts to raise awareness of need for database

Louise Prime

Tuesday, 04 March 2014

The Government and NHS must dramatically improve their efforts to raise public awareness of why care.data is such a vital project, said GP leaders this morning as they unveiled survey results showing deep public suspicion about how their data will be used and a lack of understanding of the database’s potential benefits. However, relatively few people said they were in outright opposition to it.

The survey, conducted last weekend by ComRes on behalf of the Royal College of General Practitioners, has revealed widespread confusion among the public about the electronic database, but also apathy and ignorance. About a third (35%) of the 2049 adults questioned in Great Britain, including 1782 in England, said they supported the introduction of care.data, with just a few more (38%) saying they didn’t know whether they supported or opposed it. Only just over a quarter (27%) were opposed to the introduction of the database. The College says this means public opinion of care.data could still be turned around – as long as the Government now works hard to make the case for it.

Two-thirds (65%) of those questioned said they didn’t think the case for care.data has been well publicised to the public, and only one in seven (15%) thought it had; a fifth (20%) said they ‘didn’t know’. People’s responses were very similar when they were asked how well the Government had publicised patients’ right to opt out of their records being added to care.data (66%, 15% and 19% respectively).

The survey also revealed a high level of public concern about how and by whom their data will be used. Two out of three (66%) said they would be very or fairly concerned ‘about partly anonymised personal information being passed on – via care.data – to organisations outside the NHS for commercial purposes’. Fewer than a quarter (23%) were unconcerned about this, and one in ten (11%) ‘didn’t know’.

RCGP honorary secretary Prof. Nigel Mathers said: “Unless the Government works harder to explain why care.data is such a vital project and how it will be implemented it will never enjoy the backing or confidence of the public or GPs.

“We believe that where a scheme is based on an opt-out approach it is vital that the NHS can show that it is beyond reproach in having done everything practically possible to ensure that patients know about their right to opt out prior to it going ahead.”

He added: “Care.data has the power to greatly enhance our understanding of many illnesses and diseases and therefore, over time, could be of benefit to hundreds of thousands of patients across England.

“However, the Government must dramatically step up its efforts to publicise the need for the database, and the right of people to opt out, as a matter of urgency.”

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