ABSTRACT
The care.data programme was a UK National Health Service initiative aimed at collecting and linking health data from both hospital and community settings for the purpose of planning, researching, and monitoring services. When care.data was announced, many concerns were raised. Though primary care physicians (i.e. general practitioners; GPs) had been providing aggregated data previously, care.data intended to extract individual patients’ personal and clinical data. The concerns from GPs and other medical practitioners about consent and privacy quickly spread to the professional media and then to traditional mass media, online media, and campaign groups. An additional concern was who would see this data, as the Health and Social Care Information Centre, which was charged with handling the programme, offers standard and bespoke data products to organisations inside and outside the NHS. The response of the government to these criticisms was also considered to be seriously flawed. This chapter examines care.data as a case study of professional and public trust in online records.
