Consultation highlights concerns over NCRS ownership

Concerns over who will own the summary record on the spine and how the summary data will be validated are among the issues that have been raised in response to proposals on the content of the NHS Care Record Service (NCRS).

More than 80 submissions have been received from professional and patients organisations as well as individual clinicians and patients in response to The Shared Care Record Review document prepared by Connecting for Health clinical leads to outline how the NCRS might work for patients and clinicians on the ground.The joint IT committee of the Royal College of General Practitioners and the British Medical Association’s GP committee is among the organisations that has submitted a response.

Dr Alan Hassey, joint chair of the committee and a GP in Skipton, North Yorkshire, said the committee welcomed the fact that discussion about the NCRS was now in the public domain although he criticised the short timescale of only 14 days that was set aside for consultation.

He added: “The devil of all this is going to be in the detail and we need time to work this out properly. In fact we have suggested that some of the ideas need to be piloted and clear benefits shown before they are implemented more widely.”

Dr Hassey told EHI Primary Care that one of the committee’s major concerns was that there appeared to be no owner of the National Summary Record with the result that information might appear out of context or with inappropriate weight given to it. He said the committee had suggested that it might be appropriate to make the GP record the sole source of the NSR.

He added: “Somebody has to be responsible for maintaining the national summary record. A record is not just information, you need to know about the authentification of that information and the originator of that information. For example somebody might put in ‘allergy to penicillin’ when it was actually that somebody just had a rash which coincided with taking penicillin. Codes without context also don’t mean the same things in different places.”

Other issues highlighted by the RCGP/GPC committee included the lack of sufficient details about how access controls via legitimate relationships would work which Dr Hassey described as “a major gap” in the document.

He added: “The information governance arrangements are extremely woolly and that really has got to be a priority area, We don’t think Caldicott Guardians are going to have the resources not just in terms of money but in time, training and skills to police all of this so that needs a lot of work.”

Dr Hassey, who represents the RCGP, said the college was keen to work as constructively as possible to ensure quality and standards were upheld in the NCRS.

He added: I think we feel that wherever we are going we wouldn’t have started from here but from the RCGP’s perspective we accept that we are not going to change the architecture and we want to make the best of what’s there.”

Other groups that have submitted a response include the Primary Healthcare Specialist group of the British Computer Society,

Dr Glyn Hayes, president of the PHCSG, said the PHCSG had some significant anxieties about the proposals to allow patients to control access to information by their carers.

He told EHI Primary Care: “You are going to have records that don’t have everything on them but the human reaction will be that these records are accurate and complete. It’s a fact of life that people believe what computers show them.”

Dr Hayes said the PHCSG had said that it would be essential to flag up very carefully that information had been withheld and also reiterate to clinicians the need to check information for themselves.

He added: “We also feel very strongly that patients have got be well educated that withholding information is potentially very dangerous.”

Dr Hayes said the PHCSG was also very concerned about who was going to validate the quality of the data going in to the summary record and how electronic prescribing records would work on the summary record when in some cases a patient might have a dozen changes of drug within a week.

“There needs to be some sort of mechanism to decide which ones are the important ones and which ones are not.”

Among the individuals who have responded to the consultation is Dr Paul Thornton, a GP in Kingsbury, Warwickshire whose correspondence with a senior Department of Health civil servant over the NCRS opt out policy was featured on BBC Radio Four’s Today programme earlier this year.

Dr Thornton, a member of one of the Caldicott Committee’s working parties on privacy in the late 1990s, said he felt the document failed to achieve anything because it was still working within the framework of the Care Record Guarantee which does not offer patients the right to opt out of the NCRS.

Dr Thornton said it was important to make clear that although patients could withhold information from view they would not be able to keep if off the spine.

He added: “All patients information will be put on the spine it’s just that some of it will be hidden. Hiding it is also dependent on software that’s still untested and even if those provisions work the provisions can be overridden.”

Dr Gillian Braunold, who shares the GP clinical lead role for Connecting for Health with Professor Mike Pringle, said she had been delighted with the response so far.

"We have received more than 80 submissions with numbers rising all the time," she said.

Dr Braunold said a new version of the document will be drawn up in the light of the comments received and that document will be presented to next week’s Care Record Development Board meeting.

After that a new version will be published which will also be seen as a work in progress document rather than a completed report.

She told EHI Primary Care: “It was never the idea that there would be three weeks of consultation and that would be the end of it. This is an iterative process and we will be putting more things out for consultation and then we will go on from there. We see this on-going process of consultation and discussion as a very critical part of what we are doing.”