Pilot lights the way for National Care Record
By Ian Cameron
The creation of a central database holding an electronic record for every patient – the
National Care Record – is the centrepiece of the Government's reform of NHS IT systems.
It is a massive project. Wherever and whenever a patient is seen, crucial details such as allergies and potential drug interactions should be available to the treating clinician.
Yet it is also a project beset with problems. GPs have deep worries about confidentiality, given that around one million NHS staff will have some form of access to the system.
Consent is also a concern. The model chosen by Connecting for Health is for patients specifically to have to opt out if they don't want their summary record held on the national database. A widespread publicity campaign will support this.
This model is opposed by the GPC, which wants patients to give explicit consent for their data to be included.
The result of these concerns is the project has suffered delay after delay, and is now two years behind schedule. Yet there is evidence that such a system can be made to work.
Last month, doctors in Hampshire and the Isle of Wight began using a system that, while not part of Connecting for Health's plans, amounts to a
local pilot of the Care Record.
Hampshire and Isle of Wight strategic health authority has created a database containing the records of 650,000 patients – nearly half the county's population. The database contains online summaries of conditions, allergies, prescriptions and important procedures extracted from Read-coded data on GPs' systems.
A further 500,000 documents from hospitals, including discharge summaries, path-ology results and procedures have also been loaded. Data is updated automatically every night. In its first month, there have been 10,000 log-ins to the record.
As with the plan for the National Care Record, patient consent has been assumed and a public awareness campaign has informed people what was happening. Of the 1.5 million sent a leaflet, 1,250 have opted out.
Dr Nigel Dickson, a GP in Southampton and a former Caldicott guardian, says he remains sceptical about this consent process.
He says: 'I didn't get the leaflet at home and nor did half the LMC. We are all patients too so I do have an issue about the validity of an opt-out model.'
But there is a major difference in the way the system operates which Dr Dickson and others believe can overcome this problem and, if used by the national system, could win over doctors' opinions.
Unless it is an emergency and the patient is unconscious, doctors must first obtain consent from the person face-to-face before they can access the record. The system also logs patient encounters, so clinicians can tell who has seen a patient and when.
Dr Paul Cundy, chair of the GPC's IT subcommittee, says the difference between this and the national system is 'profound'.
He says: 'We approve of this because it is an opt-in scheme and for anyone to say it's opt-out shows they are being disingenuous or don't understand the difference.'
Dr Mark Kydd-Coutts, a GP in New Milton, agrees that getting face-to-face consent is a workable solution to problems with consent. He says: 'The more the system is used either in front of patients or when speaking to them out-of-hours and asking for their permission to access their records, the set-up will come more to the fore and be discussed in the media.'
Dr Gillian Braunold, national clinical lead for Connecting for Health, plans to visit the area next month to see for herself how the scheme is going.
'I see this as part of a pilot of behavioural change,' she says. 'Here we have a project which is enabling the sharing of records across disciplines with a governance structure to address practice and patient concerns. There's a lot to learn from that when you are setting up similar structures.'
But despite the support from Hampshire GPs for their consent model, Dr Braunold says the national system will not require explicit consent from patients each time their record is accessed. Inbuilt restrictions on who can access what information will prevent the need for individual consent to be achieved each time a record is accessed, she adds.
Connecting for Health still has a great deal of work to do to convince GPs.
Dr Adrian Hamilton, a GP in Waterlooville, sums up the views of many GPs when he says hospital doctors will gain far more than GPs. 'Nationally it is a waste of money,' he adds.
But the general consensus of other GPs in Hampshire to their local pilot so far has been positive. If Connecting for Health learns the lessons of this pilot, it might just make the Care Record work.