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

Abstract

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

Figure 1: Rates of patients opting out, by CCG: England (with inlay map of London CCGs), as at December 2018. Data from NHS Digital [21]

Figure 2: Observed and simulated rates of deliveries by caesarean section: By CCG, 2016/17 [21, 25]

Figure 3: Observed and simulated rates of births with very low birth weight (<1500g) observed and simulated rates: by CCG, 2016 [21, 25]