Involving service users in the Birth Timing project, a data linkage study analysing the timing of births and their outcomes.

introductionWe report on service user participation in a population-based data linkage study designed to analyse the daily, weekly and yearly cycles of births in England and Wales, the outcomes for women and babies, and their implications for the NHS. Public Involvement and Engagement (PI&E) has a long history in maternity services, though PI&E in maternity data linkage studies is new in the United Kingdom. We have used the GRIPP2 short form, a tool designed for reporting public involvement in research.

objectivesWe aimed to involve and engage a wide range of maternity service users and their representatives to ensure that our use of patient-identifiable routinely collected maternity and birth records was acceptable and that our research analyses using linked data were relevant to their expressed safety and quality of care needs.

methodsA three-tiered approach to PI&E was used. Having both PI&E co-investigators and PI&E members of the Study Advisory Group ensured service user involvement was part of the strategic development of the project. A larger constituency of maternity service users from England and Wales was engaged through four regional workshops.

resultsTwo co-investigators with experience of PI&E in maternity research were involved as service user researchers from design stage to dissemination. Four PI&E study advisors contributed service user perspectives. Engagement workshops attracted around 100 attendees, recruited largely from Maternity Services Liaison Committees in England and Wales, and a community engagement group. They supported the use of patient-identifiable data, believing the study had potential to improve safety and quality of maternity services. They contributed their experiences and concerns which will assist with interpretation of the analyses.

conclusionUse of PI&E 'knowledge intermediaries' successfully bridged the gap between data intensive research and lived experience, but more inclusivity in involvement and engagement is required. Respecting the concerns and questions of service users provides social legitimacy and a relevance framework for researchers carrying out analyses.