A risk analysis conducted for NHS Connecting for Health has concluded that patient care would probably be safer using locally held sealed envelopes rather than storing them on the NHS data spine.
The recommendations in the internal document, written by risk management company Det Norske Veritas and delivered to CfH in September, would seem to cut across the Department of Health’s original vision that Detailed Care Records for every patient will be held on the spine, including sealed envelopes.
EHI Primary Care understands that CfH’s current policy on sealed envelopes, as outlined by Professor Mike Pringle, co-GP clinical lead at GP engagement events across the country, is for a two tier system of “sensitive” and “extra sensitive” information for sealed envelopes with extra sensitive information not available outside the clinical team that created it.
Dr Paul Thornton, a GP in Kingsbury, Warwickshire who is campaigning against the consent and confidentiality proposals for the NHS Care Records Service (NCRS), is publicising the report which he says highlights the problems of holding all patients’ records on the spine.
He said: “These confidentiality risks to health have been found to outweigh the benefits from automatic sharing of health information on a national database. The more that information is accessible by all health workers, the less likely it becomes that crucial information will be divulged to any one of us.”
The Det Norske Veritas consultants were originally asked by CfH to weigh up the relative risks of sealing information against a situation where sealed envelopes were not available. During the course of compiling the report a third possible approach, of sealed envelopes held locally, was included in the review and the conclusion was that it provided the lowest risk to patient safety and confidentiality.
The latest thinking on sealed envelopes is being aired as GP practices start to receive requests from patients to opt out of the NCRS, following publicity in the national press. Dr Thornton said be believed a good proportion of GPs have had a small number of their patients send in opt out letters. His advice to practices is that such patients have the Read code 93c3 added to their record- refused consent for upload to national shared care record.
A new national patients’ campaign, The Big Opt Out, is due to be launched later this month backed by the Foundation for Information Policy Research and the 23 academics who have called for an enquiry into the National Programme for IT.
Dr Thornton added: “The agenda has been set and it is reasonable to expect that many more patients will send in opt out letters.”
Dr Mark McCartney, a GP in Cornwall who plans to opt out himself, has received requests from four patients to opt out of the NCRS so far. He told EHI Primary Care: “I am slightly surprised there haven’t been more but I expect there will be when it becomes more widely known and when the system goes live.”
Dr McCartney said he attended one of the GP engagement forums in Somerset where he said the majority of participants said they would prefer an explicit consent model. He added: “I still have a faint hope that we will have a local record with local access.”
The proposed implicit consent model for the Summary Care Record is currently being studied by a ministerial taskforce set up by health minister Lord Warner in the summer and chaired by Harry Cayton, also chairman of the Care Record Development Board (CRDB).
A spokesperson for the Department of Health told EHI Primary Care that the taskforce has met three times and will hold a last meeting in the first week of December. She added: “Its report will be submitted after that. The content of the report is a matter for the Taskforce and ministers. Ministers will decide whether or not to publish it. Its report will be submitted after that.”
Professor Pringle told EHI Primary Care that he had “considerable confidence” that the early adopter sites for the NCRS would begin on schedule in the spring and he said that the issues around consent were also being aired at the GP engagement forums.
He added: “We can’t prejudge what the taskforce are going to say but we have been discussing with the audience what the arguments are. There isn’t a perfect answer but we are trying to listen to what people think they can achieve and what’s in the best interests of patients overall and then finessing those problems against the political problems.”
A vox pop filmed for the CRDB annual meeting last week found broadly positive views about the idea of a summary care record, but some reservations about confidentiality.
Comments included:
“I don’t mind. What are you going to do with it [personal information] if you aren’t a doctor?”
“I think it’s necessary. In an emergency you are going to need it quickly.”
“Good idea if it speeds up the process of receiving appointments…I probably would be concerned about confidentiality because, at the moment, I think it’s too easy for anybody to access personal files.”
CRDB chair, Harry Cayton, said he felt the comments set out the issues well. How we realise the undoubted benefits in terms of safety efficiency, co-ordinated care and research without damaging confidentiality, he asked.
Other vox pop interviewees told personal anecdotes which illustrated information problems. One woman with type one diabetes who had also had a thyroidectomy found herself trying to recall details of her medical history at her first ante-natal check up because staff had no access to her notes. “They had to re-do lots of tests,” she said.
Another discovered her mother’s medical records had been found in cereal boxes in the garage of mass murderer and GP, Harold Shipman. “I’ve been reading in The Guardian that there’s a lot of fuss about electronic records but they weren’t completely safe as paper records,” she commented.
Cayton said he felt user had a very important message: “If we get it right, far from destroying trust and confidentiality and continuing care, the electronic record will enhance and improve these things.”