Big health data: the need to earn public trust

Failures in implementation of data sharing projects have eroded public trust. In the wake of NHS England’s decision to close down its care.data programme, Tjeerd-Pieter van Staa and colleagues examine how we can do better Better use of large scale health data has the potential to benefit patient care, public health, and research. The handling of such data, however, raises concerns about patient privacy, even when the risks of disclosure are extremely small. The problems are illustrated by recent English initiatives trying to aggregate and improve the accessibility of routinely collected healthcare and related records, sometimes loosely referred to as “big data.” One such initiative, care.data, was set to link and provide access to health and social care information from different settings, including primary care, to facilitate the planning and provision of healthcare and to advance health science.1 Data were to be extracted from all primary care practices in England. A related initiative, the Clinical Practice Research Datalink (CPRD), evolved from the General Practice Research Database (GPRD). CPRD was intended to build on GPRD by linking patients’ primary care records to hospital data, around 50 disease registries and clinical audits, genetic information from UK Biobank, and even the loyalty cards of a large supermarket chain, creating an integrated data repository and linked services for all of England that could be sold to universities, drug companies, and non-healthcare industries. Care.data has now been abandoned and CPRD has stalled. The flawed implementation of care.data plus earlier examples of data mismanagement have made privacy issues a mainstream public concern. We look at what went wrong and how future initiatives might gain public support.