City researchers adopt a tiered approach to public involvement and engagement, helping to ensure social legitimacy, and public relevance, of a data linkage study.
Published in the International Journal of Population Data Science, a new peer-reviewed article highlights the importance of public involvement and engagement (PIE) in research, specifically, data linkage studies. The research team ensured that their use of linked administrative data about mothers and their babies is socially and ethically justified from a service user perspective.
The Birth Timing Study
The Birth Timing Study is led by researchers at the Centre for Maternal and Child Health Research, City, University of London. It is a population-based study designed to link together data recorded at birth and any subsequent hospital admission. The study has been using these data 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.
In 2018, the study published findings showing key patterns of birth across England and Wales that have important implications for midwifery and medical staffing, and that can significantly inform policy-making in this area.
Linked maternity and birth data
The Birth Timing Study has involved the linking of routinely collected data from three sources: data recorded when births are registered by parents; birth data notified by midwives; and data from hospital systems for all births in England and Wales for ten years, from 1st January 2005 to 31st December 2014.
The data were anonymised and processed in a secure system run by the Office for National Statistics (ONS), and at no stage were researchers able or permitted to identify individuals in files of seven million births.
However, use of routinely collected personal health data remains an area of potential concern for the public. Information about planned studies must be publicly available, so that citizens and those with an interest know what has been authorised. It is important that researchers consult and work with relevant members of the public, including service users, involving them in the design and analyses of the research.
Practices of this kind are important in terms of research ethics, questioning whether, and working to ensure, that the public feel this kind of research has moral legitimacy and serves the public good.
To facilitate these practices the Birth Timing Study adopted a three tiered approach to public involvement and engagement with the study:
Two co-investigators on the Birth Timing study had significant experience of public involvement and engagement in maternity research from their prior roles as service user representatives, and were involved as ‘service user researchers’ from the design stage to dissemination stage of the study.
Four people with a service user perspective acted as advisors to the co-investigators as members of a multidisciplinary Study Advisory Group, addressing the overall conduct of the study, the study questions, analysis, outputs and dissemination of findings.
Four engagement workshops were held with around 100 service users recruited from Maternity Services Liaison Committees (MSLCs), multidisciplinary health forums, from all over England and Wales and from an inner-city community engagement group. All were current or previous users of maternity services. Many of the MSLC members worked with local antenatal and postnatal parents support groups, some as antenatal teachers, breastfeeding counsellors or doulas (trained birth companions who provide support).
The article suggests that use of PIE ‘knowledge intermediaries’ successfully bridged the gap between the data intensive research and ‘lived experience’, helping to guide the Birth Timing Study. However, it also recommends further inclusivity in involvement and engagement, particularly with maternity service users from Black, Asian and minority backgrounds.
The article reports that attendees of the study’s engagement workshops supported the linking and use of their own and other women’s personal health data, believing the Birth Timing Study had potential to improve safety and quality of maternity services.
Concern about staffing levels was mentioned many times during the workshops. While the study could not analyse staffing levels because of the limitations of routinely recorded data, it is widely understood that there can be different levels of staffing, of staff seniority and access to interpreters at different times, such as at night and at the weekend.
The researchers found that the contribution of the experiences and concerns of workshop attendees confirmed the validity of the planned study analyses and will assist in their interpretation. The article concluded that respecting the concerns and questions of service users provides social legitimacy and a relevance framework for researchers carrying out study analyses.
First author of the article, Mary Newburn, who is an Honorary Senior Research Fellow at the Centre for Maternal and Child Health, City, University of London, said:
“This study has formed the basis for some really exciting analyses. Within this phase of the research we compared the timing of births in different settings: home births, births in midwifery units and in hospital obstetric units. With very large datasets subtle differences can be observed that would not be evident in smaller studies.
Find out more
Visit the Centre for Maternal and Child Health Research webpage at City, University of London.