Lewis, KM;
Hardelid, P;
(2020)
National data opt out programme: consequences for maternity services in England.
International Journal of Population Data Science
, 5
(1)
, Article 103. 10.23889/ijpds.v5i1.1126.
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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.
| Type: | Article |
|---|---|
| Title: | National data opt out programme: consequences for maternity services in England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.23889/ijpds.v5i1.1126 |
| Publisher version: | https://doi.org/10.23889/ijpds.v5i1.1126 |
| Language: | English |
| Additional information: | This work is licensed under a Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/). |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10092825 |
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