Care record to be overhauled after evaluation finds mass confusion
By Steve Nowottny
Government IT bosses have been forced into a fundamental rethink of plans for electronic care records, after a damning official evaluation uncovered enormous confusion among patients.
The report, by researchers at University College London, also raised fresh fears over the security of the Summary Care Record and accused managers of rushing the rollout to meet political targets.
The national rollout in GP practices now faces being delayed by years, with some experts telling the evaluation it should be shelved altogether in favour of local IT systems.
In what would be a huge climbdown, Connecting for Heath signalled it might be ready to scrap the implied consent model for allowing access to records, which was singled out for particular criticism.
Access is currently allowed unless patients opt out before their data is uploaded. But the report authors recommended patients be asked to give explicit consent every time their
Summary Care Record is viewed – a model used in Scotland and Wales.
The move is a victory for Pulse's Common Sense on IT campaign, which called for an explicit consent model and a watertight system of protecting patient data.
Professor Trisha Greenhalgh, the GP and professor of primary care at UCL who led the
evaluation, said the consent model had caused widespread confusion. ‘Patients very often said to us, "I can't get my head around it",' she said.
Dr Gillian Braunold, clinical director for the Summary Care Record, told Pulse she would back the ‘consent to view' model.
‘It's still an opt-out but it's an extra layer of control for patients,' she said. ‘It will make things much more acceptable both from the professional and the patient perspective if we can incorporate that extra layer of control.'
In interviews with more than 100 patients and carers in the trial areas, the report found two-thirds showed no awareness of the project, despite being sent letters as part of an
extensive publicity campaign. One GP told researchers: ‘Patients don't have a clue.'
Dr Paul Cundy, chair of the GPC IT subcommittee, said the evaluation showed the implied consent model and public information campaign launched by Connecting for Heath had been an ‘abject failure'. The BMA strongly recommended that further rollout be halted until changes were made.
The evaluation reported that a ‘significant minority of GPs' had chosen not to participate in the programme. ‘Much of the individual resistance within practices has come not from IT-ignorant "laggards" but from Caldicott Guardians who are often the most information-literate members of staff,' it said.
The report added ‘not a single patient' was confident the Summary Care Record was 100% secure and that although nobody had hacked into the system yet, there remained
‘unresolved questions' about whether linked smaller systems would be safer.
Too often, it said, decisions were made because of ‘political timescales' that created a ‘climate of pressure'. GPs in both Bury and Dorset, two of the pilot areas, had reported being ‘coerced' into taking part.
CONSENT – report urges move to ‘consent to view' model, with implied patient consent for upload of records, but explicit consent every time records viewed at point of care
PATIENT AWARENESS – patients generally showed ‘little awareness of the project and little interest in it' – many had not read their letters or did understand the consent model
PRESSURE FROM THE TOP – Connecting for Health bosses accused of being ‘extremely pushy' by PCT staff, while practices complained of ‘coercion'
NARROW FOCUS – raises fears that ‘technological push is being prioritised at the expense of attention to wider socio-technological change'