Concern at medical records sharing

Two polls for the Medical Protection Society show most patients have not yet received leaflets explaining the system and GPs fear patients will not be informed enough to decide whether to opt out.

Last week, the Royal College of GPs warned of a “crisis of public confidence” in the new care.data system. While it supports the plan in principle, it said it was “very worried” the public had not been properly informed.

There has been huge criticism of care.data, which is being established to aid medical research and monitor NHS performance more closely.

The idea is to link data from GP records with information from hospitals to give an idea of what happens to patients along the way.

The data being extracted from GP systems includes things such as family history, vaccinations, referrals for treatment, diagnoses and information about prescriptions.

It can also include biological values such as a patient’s blood pressure, body mass index and cholesterol levels.

Personal confidential data identifiers will also be included such as date of birth, postcode, NHS number and gender. The written notes a GP makes during a consultation will not be included in the information, which will then be anonymised and held centrally by the NHS Health and Social Care Information Centre.

The latest YouGov survey of more than 1,400 members of the public showed 67 per cent have not received the leaflet from NHS England explaining the new system.

Furthermore, 45 per cent do not understand care.data from what they have read or heard.

However, half of those surveyed said they were not concerned about their data being shared outside their GP practice.

A separate MPS survey of more than 600 GP members showed 77 per cent do not think NHS England has given them enough information to properly inform patients about care.data.

Some 80 per cent of GPs said they themselves did not have a good understanding of how the patient data will be used while 55 per cent had concerns about the overall system.

Of those GPs that had concerns, 67 per cent think patients will not have enough information to make an informed decision on what happens to their records.

However, 28 per cent believe the system will join up medical records while 32 per cent think it will help inform decisions about improving care in local communities.

Nevertheless, 80 per cent said the system could undermine public confidence in the principle of medical confidentiality.

NHS England has given assurances that insurance companies will not be sold data for insurance purposes. But the plans mean that private health companies that happen to have an insurance arm could be allowed access.

There is also a proposal, being discussed next month, which could give non-NHS bodies, including pharmaceutical companies, access to the data.