We all admire a Government that keeps trying, right? That’s the thought that comes to mind this week as NHS England starts rolling out the latest NHS information initiative. Throw in a handful of incendiary phrases like “patient choice”, “privacy” and “confidentiality leaks”, not to mention “IT infrastructure” and you’re guaranteed a white knuckle-ride of a story.
This week, NHS England has begun mailing its ‘Better Information Means Better Care’ leaflet to all 26 million households in England. The leaflet explains how patient records will be routinely shared and held centrally to improve the care of all patients.
Patient information - date of birth, postcode, NHS number, gender, no names – and medical records will be extracted from all GP practices and automatically passed to the Health and Social Care Information Centre (HSCIC), unless the patient chooses to opt out. Data extraction is due to start in spring 2014.
Why do your details need to be shared? Well, because patients receive care and treatment from several different places - GPs, hospitals and community services. By bringing this information together in one place, NHS England hopes that it will be able to find more effective ways of preventing, treating and managing illnesses, ensure that any changes to services reflect the needs of local patients, and help patients themseves understand the outcomes of care, so “giving you greater confidence in health and social care services”. Supporters of the scheme variously argue that it will have signficant benefits for medical research and patient outcomes. Even the British Medical Association and the Royal Colleges are on board.
So far, so cosy. Patient information has even been given a cuddly new name: care.data. And no, that extra full stop is not a typo.
Not everyone is convinced, of course. The Information Commissioner has waded in over concerns about the confidentiality of extracted data. And the scheme is already causing perturbations in primary care, where GPs have a statutory obligation to allow the data to be extracted, while at the same time informing patients of their right to refuse.
One can opt out, of course - as with so many things in the NHS, this is all being done in the name of better care where patient choice is paramount. But why would you want to? After all, Dr Geraint Lewis, NHS England’s Chief Data Officer, says patients can be confident in agreeing to allow their health records to be shared. Perhaps that is why the opt-out can be exercised only by speaking to your GP practice.
Responding to a written PQ from Rosie Cooper MP this week, Health Minister Dan Poulter stopped short of saying that GPs would be penalised if significant numbers of patients opted-out, but confirmed that NHS England and the HSCIC, working closely with the Care Quality Commission, would investigate practices with a high proportion of patients opting out of record-sharing.
In the meantime, Labour MP for Birmingham Hall Green, Roger Godsiff, has tabled a lengthy Early Day Motion calling for the care.data scheme to be “indefinitely delayed” until further consultation has taken place and patients are asked to opt in, not out. The Motion, not surprisingly, expressed concern at the “consistent history of large-scale data mismanagement 
and leakage across Government”. It looks like being a popular EDM. A total of three (that’s, three) signatories in its first week, including the Liberal Democrat (sic) MP for Portsmouth South, one Mike Hancock.
Whoever said NHS data projects couldn’t be fascinating?
Looking forward to receiving your copy of the leaflet now? Just remember to exercise your patient choice and book that GP appointment now. Assuming that he or she doesn’t opt out of seeing you, that is.
Helen Johnson
Managing Director - HJCL