Want to know what the NHS knows about you? Soon you will be able to find out through your private web window on the NHS electronic patient record. Senior NHS officials revealed this week that access to personal records on the planned national electronic "spine" is now a top priority for the £2.3bn project to modernise healthcare IT.
"Patient access is moving up the agenda: we're trying to bring it in as soon as possible," says Marlene Winfield, head of patient and citizen relations at the NHS Information Authority.
The plan is for patients to set up a "personal health organiser" called Healthspace on the NHS website to store personal notes and information from their doctor. They will also be able to use Healthspace to check the accuracy of information held on them by the planned "national spine" of health information," Winfield said.
The spine will be set up by a contractor to be picked shortly from a shortlist of two. It will contain extracts of basic health records of every individual known to the NHS, from 28 weeks gestation to death. Apart from checking its accuracy, Winfield says that patients would also be able to block certain pieces of information from being shared routinely through the NHS.
However, she says that research published this week by Health Which? showed that most patients are happy with their personal information being shared within the NHS.
The research was published to mark a new phase in the IT project, an attempt to win the hearts and minds of patients and clinicians to the importance of modern IT. The NHS has been accused of ignoring both in its rush to get system contracts signed.
Sir John Pattison, the Department of Health civil servant who set up the programme, admitted that: "We still have quite a way to go to give people the information they need about the programme."
Pattison, Winfield and the NHS IT director general Richard Granger were speaking at a forum on clinical involvement in the project, organised by the British Journal of Healthcare Computing. The event was a sell-out.
The Department of Health last week set up two advisory groups, representing patients and clinicians, to feed into the IT project. The National Clinical Advisory Board (NCAB) will represent clinicians, while the Public Advisory Board (PAB), chaired by Winfield, represents groups of patients, carers and other concerned citizens. These include the Patients' Association, Help the Aged, Mencap and the Consumers' Association. The group will meet initially every two months.
The new groups will have little impact on the first systems to be ordered, which have already been specified. In the long run, the Department of Health says they would play a part. "Although contracts for the equipment IT systems and services are currently being negotiated, the information they will carry, and the way the system will work, are under continuous development, and the two new groups will feed into this process."
This week, the IT project announced its first major contract - for a national system to allow GPs and other staff to book appointments for their patients electronically.
The winning contractor, Schlumberger Sema, will deploy the system over the next few months.
For Granger, the contract is especially important: the signing, on schedule, comes in the week when he celebrates his first anniversary in post as chief of NHS IT. He said that keeping to the timetable is unprece dented in a major government IT project, especially in the NHS when system procurements run for two years or more. One procurement, cancelled this year before it was signed, spent four years in contract negotiations.
Three further major contracts are to be signed next month: to run the spine itself (the shortlisted bidders are BT and IBM) and to install the system in hospitals and surgeries across London and northeast England. Contracts for the three remaining "clusters" of health authorities covering England will be signed by the end of the year, provided contractors agree to similar terms, Granger says.
The tough contract terms proposed by the NHS have alarmed several of the bidding companies. Granger is unapologetic. "We're looking for the best prices on the planet," he says. Granger claims that buying the system nationally has saved millions, including a discount of 55% on hardware prices.
Robin Guenier, of the medical opinion polling firm Medix, said that surveys consistently show that doctors support the idea of the integrated clinical records service. "On the other hand, they also show that hardly any of them know anything about it."
Pattison says that the national electronic record would play a role in the prime minister's plans for a reformed health service with care run by multiple organisations. "As you increase patient choice, then the information you hold about the patient becomes, in a sense, the defining part of the NHS as much as anything else."