A new opinion poll – released to coincide with a House of Commons adjournment debate on the issue of care.data (4 March 2014) – shows that the majority of the public in England believes that the case for the introduction of the care.data electronic database of all patient records from GP practices has not been well-publicised.
The survey, commissioned by the Royal College of General Practitioners (RCGP), also shows that two thirds of the public believe that patients’ right to opt out of having their records added to the electronic database has not been well-publicised.
In addition, the poll, carried out by ComRes, shows that support for the project is muted, with the percentage of those supporting the introduction of care.data (35%) being outnumbered by the percentage who say they do not know whether they are in support of the project or opposed (38%).
However, the poll also shows that the battle to win over the English public in support of care.data is still very much winnable – with only 27% of people saying they are opposed to the introduction of the database.
Through the care.data project, the Government intends to introduce a large, electronic database of all patients’ records, from GP practices across England, in order to create better understanding about major illnesses and diseases.
Critics have expressed concerns about the impact the project might have on the privacy of individuals’ medical records.
The RCGP supports the introduction of care.data, but thinks the Government and NHS England need to work much harder to publicise the benefits of the database, and the way it will work.
In response to the criticisms made by various organisations, the Government has delayed the introduction of care.data by six months and proposed amendments to the Care Bill, which is currently going through Parliament, in order to tighten up the way in which the data collected will be used.
The amendments reflect the demands set out by the RCGP in its own six point plan on care.data and will introduce strict new statutory controls on the circumstances under which potentially identifiable data can be disclosed. The sale or release of data for commercial purposes, such as insurance, will be outlawed and any organisation that fails to comply with the rules will be permanently disbarred for accessing such data in future.
The RCGP opinion poll, which was conducted over the weekend (between 28 February-2 March 2014), shows that 65% of people do not think that ‘the case for care.data has been well-publicised to the public’. Fifteen per cent of people think the case for care.data ‘has been well-publicised to the public’, and 20% say they ‘don’t know’.
The poll also showed that 66% of the public think that the Government has not publicised people’s ‘right to opt out of care.data well’. Fifteen per cent of the public think that the Government has publicised people’s ‘right to opt out of care.data well’ and 19% say they ‘don’t know’.
On a separate question, the poll showed that 66% of the public 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’. Twenty-three per cent said they would not be concerned ‘about partly anonymised personal information being passed on – via care.data – to organisations outside the NHS for commercial purposes’ and 11% said they ‘don’t know’.
RCGP Honorary Secretary Prof. Nigel Mathers said: “We are very grateful to the Government for listening to the concerns of GPs and for meeting the assurances sought by the RCGP in order that patients’ data is protected.
“However, our poll shows that far more needs to be done in order to make the case for care.data – and to explain to people about their right to opt out of having their data used.
“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.”
ComRes interviewed 2,049 GB adults, including 1,782 English adults, online between 28 February-2 March 2014. Data were weighted to be representative of all GB adults aged 18+.