Part III - Beyond Autonomy: Turning to the Community to Protect the Individual

Summary

The suggestion to use medical information for the purposes of health service research is not new. But the British government’s latest attempt was particularly ham-fisted. ‘Care.data’ was an initiative that sought to ‘bring together health and social care information from different healthcare settings, such as GP practices, hospitals and care homes, in order to see what’s working really well in the NHS – and what we could [improve]’.¹ Rather than using information without consent, the idea was to have an opt-out rather than opt-in system. In many ways, it was a laudable goal. However, the programme had to be scrapped following a critical report by Dame Fiona Caldicott.² Caldicott did not find fault with the scheme’s philosophy, noting that information sharing was vital to create an efficient healthcare system and to support research, but she did find that the opt-out system needed to be strengthened and that, crucially, the public had yet to be convinced of the case for data sharing.