Hospital data is already collected but NHS England says extending the initiative to general practice means it will be possible to get a fuller picture.
With the variety of care on offer and the range of conditions that patients develop, the need for a shared record is compelling. The summary care record will produce faster access to up to date information about patients and improve the ability to deliver safer, more effective care wherever the patient chooses to access that care.
The plan 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, any diagnoses and information about prescriptions.
It can also include biological values such as a patient’s BP, BMI and cholesterol levels. Personal confidential data identifiers will also be included, such as date of birth, postcode, NHS number and gender. These are needed to link the GP data with other information obtained in hospitals. The written notes a GP makes during a consultation will not be included in the information, which will be held centrally by the NHS Health and Social Care Information Centre.
But the scheme has attracted criticism from campaigners and some GPs, who are concerned that holding patients’ confidential data on a national database could increase the risk of privacy breaches or allow information to be obtained inappropriately by insurance companies. The concern is genuine, with just seven weeks to go before the national roll out, the public have not been properly informed about the benefits of and the safeguards surrounding the care.data programme. The inevitable result of the failure to make the case for the scheme is the crisis of public confidence that we are now seeing.
Leaflets explaining the scheme, and how to opt out, should have been sent to 26.5 million households in January. However, fewer than a third of adults recall getting a leaflet about changes to the handling of medical records. I have read the leaflet only because I have gone on their website and it is full of vague, woolly, generalisations and platitudes.
The BMA and royal colleges are supportive of the care.data initiative in principle, as they believe that it will help the NHS improve the quality of care for patients and to better prepare for outbreaks of infectious disease, such as flu, through for example, the use of shared suitably anonymised data to build up a picture of which treatments work best.
But now the risk assessment by NHS England, the body behind the scheme, warns that patients could be ‘re-identified’ if database data is combined with other information. It says: ‘While there is a privacy risk that the analysts granted access to these pseudonymised flows could potentially re-identify patients maliciously by combining the pseudonymised data with other available datasets (a technique known as a jigsaw attack).’ The report further warns that patients could suffer and the overall quality of data held could be eroded. ‘The extraction of personal confidential data from providers without consent carries the risk that patients may lose trust in the confidential nature of the health service.’
It is vital that people are fully informed about what their data will be used for and how they can object to its use if they wish to. For most of GPs, they really need to know that when their patients come in to see them they have got full confidence that what they tell them will not go any further.
And as it stands I don’t feel as though the information that people are getting is enough to enable them to feel that and I feel as though this could have been overcome by anonymising the data as it leaves the GP practice rather than later on. And I think that until we do that and until we give people a genuine choice of what’s happening we’re missing out on an opportunity for people to feel confident about their data being used in a way that will be to their, their family and their community’s advantage later on.
We urgently need reassurance about what plans are being made to address current GP and public concerns to restore public confidence in the scheme. The government and NHS England need to act immediately, put back the roll-out of the scheme so patients could be consulted more, otherwise further questions will inevitably be asked about the wisdom of rushing the scheme through before the current gaps in information and awareness have been addressed.* Dr Chand is BMA deputy chairman but is writing in a personal capacity.