Most patients (67%) claim they have not received the leaflet purporting to explain the new care.data system, a survey has revealed.
A survey commissioned by the Medical Protection Society (MPS) also found 45% of patients do not understand care.data from what they have read of heard.
Care.data is a national database that will hold and analyse patient records with the aim of improving the quality of care.
The data – pulled from GP practices and linked to hospital records – will also be used for research.
Leaflets with information about the scheme, entitled Better information means better care, were distributed to households throughout January and patients were advised to ring their GP practice to ‘opt out’ if they do not want their data to be sent to the new database.
A separate MPS survey of over 600 GPs revealed 77% do not think NHS England has given them enough information to properly inform patients about care.data.
And 80% of GPs do not believe they have a good understanding of how patient data will be used in the care.data system.
Over half (55%) of GPs have concerns about patient data being shared, with 37% still undecided. Of those GPs that have concerns, 67% believe patients will not have enough information to make an informed decision about their data.
Dr Pallavi Bradshaw, medicolegal adviser at MPS, said: “While we recognise that sharing information about patients could transform the way the NHS cares for and treats people, it is worrying that GPs feel that there is a lack of information for patients to make an informed decision about their personal data.
“This is a huge step in modernising health services, which most people will only find out about in a mail-drop to households and that may get lost or discarded along with take-away menus and supermarket offers.”
The benefits of the new system are reflected in GP responses with 28% of those surveyed by MPS believing it will join up medical records across the care pathway and 32% believing care.data will aid local decision makers on how best to meet the needs of local communities.
However, of the GPs that have concerns, 80% believe the system could undermine public confidence in the principle of medical confidentiality.
Dr Bradshaw, said: “There is no doubt that technology offers enormous opportunities in managing healthcare, but we do not want this to be at the cost of trust between the doctor and patient.
“The extraction of patient data is imminent and MPS believes that the onus is now on the NHS to do more. They need to make sure that GPs have enough information to support patients with any enquiries about care.data and that patients receive information to enable them to make an informed decision about their personal information.”