Restore public trust in care.data project

摘要

Public confidence has already been undermined in the National Health Services care.data programme in England, which will integrate medical records into a database for health-care and research purposes (Nature 507,7; 2014). We suggest that the UK governments decision to limit release of the data should be the start of a process to develop public trust in large-scale health research, not an end to it. Care.data first needs to provide more information to the public about how medical records will be used. Openness and clarity are essential. For example, the UK Health and Social Care Information Centre (which manages the data) can currently share pseudonymized data with such persons and in such form and manner... as it considers appropriate': these choices should be fully explained to the public.