About this event
The Office For National Statistics (ONS) are pleased to welcome Mary Newburn, Miranda Scanlon, Rachel Plachcinski and Alison Macfarlane, to give a virtual presentation on their project ‘Involving the public with an analysis of daily, weekly and yearly cycles of births using linked data’.
Mary Newburn is an advocate for women using maternity services and has worked in the voluntary sector in various roles. She has lived experience of birth and motherhood, and qualifications in Sociology and Public Health. She is now PPIE lead for Maternity and Perinatal Mental Health at ARC-South London.
Miranda Scanlon has considerable experience of service user involvement in research and policy in maternity care and was a senior research fellow at City, University of London. A kidney transplant patient, she is currently Lay Advisory Group Lead at Kidney Research UK and co-chair of the UK Renal Health Data Research Network.
Rachel Plachcinski came to PI&E through facilitating antenatal courses. She leads on PI&E for several projects including the Policy Research Unit for Maternal and Neonatal Health and Care, University of Oxford. She specialises in data intensive research and was one of the original members of HDR-UK’s Public Advisory Board.
Alison Macfarlane worked as a statistician in agricultural research, transportation studies and child health before specialising in routinely collected data for research on birth and maternity care. She established the City Birth Cohort to link and analyse data recorded at birth with children’s subsequent hospital admissions.
Their first goal was to reach a wide constituency of maternity service users to gain their perspectives on the creation of a new linked dataset and the development of our research questions. They developed a three-tiered approach to PI&E, with PI&E co-investigators and a PI&E Advisory Group ensuring service user involvement was part of the strategic development of the project and regional workshops for parent representatives on Maternity Voices Partnerships reaching a wider demographic. They found wide support for the use of data in this way, with parents stating the study had potential to improve safety and quality of maternity services. Their experiences and concerns have assisted with interpretation of the analyses into the following phases of the study.
Parents were also interested in issues such as where birth had taken place. This presented a challenge to the research team as each of the three datasets used had different codes for place of birth which also sometimes changed over the study period. They drew on the BirthChoiceUK database of maternity units to unify the coding and allow analyses by place of birth and type of birth setting.
Their subsequent project has employed this model to similar effect and to introduce lay audiences to analysis of publicly available datasets to contribute to public confidence in data intensive research.
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