Care.Data survey report, Devon
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Healthwatch Devon initiated a rapid response survey through February 2014, in response to growing concerns about the information sharing initiative 'care.data' developed by NHS England. In January 2014, NHS England announced that it would be distributing leaflets to all households in England, which would explain the benefits of sharing the information that is collected about them in relation to the care they receive. The ‘Better Information Means Better Care’ leaflet was designed to inform patients and the public that sharing the information that is held about their care could help the NHS to ensure that the quality and safety of services was consistent across the country. It could also highlight areas where further research or investment might be required, for certain conditions or diseases.
After the scheme was announced, concerns were raised almost immediately from members of the public as well as GPs, who were worried about where this information would be shared and with which organisations. Many local Healthwatch organisations escalated the concerns that they were hearing to Healthwatch England.
At the beginning of February 2014, Healthwatch Devon started to hear from people who had not received their leaflet on the care.data scheme. Devon Senior Voice, a key service delivery partner to Healthwatch Devon, set up public meetings for people to share their views and concerns. At the same time, Healthwatch Devon wanted to ask people whether they had received the leaflet, if so, whether they understood it and if they are would consent to their medical data being shared as part of the care.data scheme.
As a result of concerns raised to NHS England, the scheme rollout was deferred until the Autumn of 2014 and Healthwatch Devon said they would take a lead from Healthwatch England, which will be actively seeking to influence NHS England's attempts to produce better and more effective information for the relaunch of care.data in the autumn. In order to do this they shared the findings of the survey with Healthwatch England as well as the local NHS Commissioners.