Exclusive As few as 15% of patients and just half of all GPs and practice staff understand the care.data scheme despite a national campaign to inform the public that records will shortly be extracted from GP practices, a Pulse survey has found.
The findings from the poll of 424 GPs will bolster the arguments of privacy campaigners who have argued that patients should be required to give consent and opt in to the data sharing scheme rather than opt out.
NHS England and the Information Commissioner’s Office are conducting their own assesments of the effectiveness of the publicity campaign with the last of the leaflets to English households due to have gone out this week. But Pulse’s survey suggests that public awareness of the scheme remains low.
The respondents to the survey were each asked to provide a percentage estimate for awareness among practice staff and patients. The averaged estimates suggest some 51% of GPs and practice staff and just 15% of patients understand the scheme. The survey respondents also estimated that an average of 7% of patients would opt out.
The awareness raising campaign led by NHS England was centred around a leaflet sent to all homes in England – itself a concession to placate GP and public concerns. However, the leaflet contains only one mention of care.data, in a link to a website that Pulse has learned has received fewer than 47,000 visits since its creation in August 2013.
The campaign has also involved media and social media coverage, and information ‘cascaded’ through patient groups and charities.
GPs have also been issued with publicity materials to display around the practice, and were told to ‘continue to communicate actively’ as their statutory obligation to share data does not remove their data controller responsibilities.
Pulse’s survey also found that 6% of practices have sent emails to patients and 75% have put up notices in the waiting room, while 60% have made a note on their practice website.
Just 12% of practices have taken no additional steps to specifically inform patients, a move which could be construed as a failure to meet their fair processing obligations and incur the wrath of the ICO.
Other actions taken by practices to inform patients include SMS text messages, messages on practice TVs and adding messages to repeat prescriptions, while several also turned to social media sites such as Facebook and Twitter.
Dr Simon Gilbert, a GP in Mitcham, Surrey, expressed doubts whether any NHS-commissioned IT system would be safe.
He told Pulse: ‘I fully expect most information, whether on care.data or not, to be leaky, both from a technological point of view and from poor user practices.’
Dr Bipin Desai, a GP locum in Brighton, questioned whether the care.data scheme could effectively meet its goals as it relies on linking GP data with information from secondary care sources who don’t come close to general practice’s level of digitisation.
He told Pulse: ‘[I’m] not sure how secure the IT system is and who can view the data; also lot of hospitals still use hand written paper records so the data is likely to be inaccurate.’
Patients have also been taking to Twitter to report their experiences of opting out of the scheme. One such patient, Jackie Rafferty, told campaign group medConfidential via Twitter: ‘My GP receptionist pulled out the [Summary Care Record] opt out info when I asked about care.data opt out. No info on latter… The practice manager has been asking for information and training. Nothing forthcoming so far.’
A spokesperson for NHS England told Pulse: ‘The Royal Mail is currently distributing the leaflets to every household in England. NHS England will survey a sample of households to evaluate the effectiveness of the leaflet and other communication methods, which includes asking whether they recall receiving the leaflet and how much of it they read.’
The spokesperson added: ‘Objections must be registered with the patient’s GP. NHS England and the HSCIC will work with the BMA and the RCGP to monitor objection rates for each practice to ensure that objections are being implemented fairly.’