In January, a leaflet was sent out to 26 million households in England, explaining the benefits of sharing information about the care they receive. However, patient and doctor groups such as the Royal College of General Practitioners, the British Medical Association and Healthwatch felt that more needed to be done to allay patients’ fears.
‘It was clear from GPs on the ground that patients remained inadequately informed about the implications of care.data,’ said Chaand Nagpaul of the British Medical Association, adding that while the BMA is supportive of using anonymised data, ‘this must only be done with the support and consent of the public’.
Tim Kelsey, national director for patients and information at NHS England, explained: ‘We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared.’
NHS England will now work with patient groups to promote awareness and look into further measures that could be taken to build public confidence. It will also work with a small number of volunteer GP practices to test the quality of the data.
Hetan Shah, executive director of the RSS said: ‘This is a really important initiative with the potential to provide real public health benefits. The delay is sensible to give more time to ensure the public are informed and any concerns they have are allayed.’
StatsLife has published two opinion pieces examining the issues surrounding the care.data programme. Alison Macfarlane and Allyson Pollock outline the concerns over sharing patient data and where the programme is currently, while Jenny Lewis of Dr Foster puts the programme in the context of current data sharing activities in the NHS.