MPS surveys of GPs and public reveal lack of information around care data

A YouGov survey commissioned by the Medical Protection Society (MPS) has revealed that 67% of over 1400 respondents from England say they have not received the leaflet from NHS England explaining the new care.data system.¹ Furthermore, 45% do not understand care.data from what they have read or heard.

This follows a separate MPS survey of over 600 GP members that revealed 77% do not think NHS England has given them enough information to properly inform patients about care.data. Alongside this, 80% of GPs do not believe they have a good understanding of how patient data will be used in the care.data system.²

Care.data, a national database which will hold and analyse information from patients’ medical records with the aim of improving the quality of care, is due to be launched by NHS England in the spring.³ 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.

The YouGov survey commissioned by MPS also showed that a half of respondents are not concerned about patients’ medical records being shared outside the GP practice as part of care.data. In contrast, over half (55%) of GPs do have concerns about the care.data system, 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.'

Care.data is the first time that information from GP records will be extracted alongside information from hospital records, providing a complete picture of the care that individuals receive. 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. Although the results tell us that half of patients are not concerned about their medical records leaving the GP practice, we worry that this is because, historically, patients have had confidence in their GP to look after their personal data. Some patients may see the scheme as an unwelcome intrusion into their personal lives which could irreversibly damage the relationship with their family doctor.'

In spring, all patients’ medical records will be automatically enrolled into the care.data system, unless they actively opt out by contacting their GP practice.

Dr Bradshaw continued, '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.'