Big Voice or Big Data? The Difficult Birth of care.data

Abstract

In the United Kingdom (UK), a range of historical national healthcare data collections have occurred, in some cases without a very specific legal basis apart from overarching international and European Union data protection commitments expressed in the UK Data Protection Act 1998. In 2012, the English Government announced that the GP Extraction Service (now care. data), a new central flow of patient-identifiable healthcare data from general practice computer systems, would commence to support healthcare commissioning. Data on the whole population would be extracted, and specific patient consent would not be sought. UK primary healthcare data is characterised by its richness, and comprises demographic, diagnostic, clinical, prescribing, test results and a range of other classes of data. In 2014 the English media and several non-governmental patient organisations began a campaign questioning the care. data initiative, and uncovered quite limited but nonetheless damaging evidence of improper release of patient data from historical data sources. A subsequent national review of information governance and a parliamentary inquiry has delayed care. data implementation, and a patient opt-out is being introduced. Another positive effect is the subsequently much higher public awareness of care.data.