National data opt out programme: consequences for maternity services in England

• DOI: 10.23889/ijpds.v5i1.1126
• Publication Date: 2020-01-30T22:37:11Z
• Authors: Kate Marie Lewis; Pia Hardelid
• Keywords: Data Sharing; Opting out; Information Sharing

Electronic health records offer great potential for individual care, service improvement and, when collated, the of wider population. Datasets composed these types have been invaluable to our understanding risk factors maternal and infant ill-health. However, a barrier data quality in England is emerging where patients choose opt out sharing their information beyond NHS. Focussing on maternity statistics, we will present importance population level monitoring NHS services, consequences opting out. Evidencing success similar systems Nordic countries, argue that English must be better informed implications research safeguards place protect patient information.