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BMJ Paediatr Open. 2019 Jun 25;3(1):e000515. doi: 10.1136/bmjpo-2019-000515. eCollection 2019.

Better Use of Data to improve parent Satisfaction (BUDS): protocol for a prospective before-and-after pilot study employing mixed methods to improve parent experience of neonatal care.

Author information

Neonatal Medicine, Imperial College London, London, UK.
Parent Representative, Chelsea and Westminster Hospital, London, UK.
NIHR CLAHRC for Northwest London, London, UK.



Having a baby that requires neonatal care is stressful and traumatic. Parents often report dissatisfaction with communication of clinical information. In the UK neonatal care data are recorded daily using electronic patient record systems (EPR), from which deidentified data form the National Neonatal Research Database (NNRD). We aim to evaluate the impact of sharing neonatal EPR data with parents, on parent-reported satisfaction, parent-staff interactions, staff workload and data completeness.


A prospective, before-and-after, mixed-method study. Participants are parents of inpatient babies (maximum 90) and staff in a tertiary neonatal intensive care unit, London, UK. The intervention was developed by former neonatal parents, neonatologists and neonatal nurses: a communication tool for parents comprising individualised, written, daily infant updates for parents, derived from EPR data. The intervention will be provided to parents over 6 weeks. Plan-Do-Study-Act cycles will inform the tool's iterative development and improvement. The tool's impact will be measured using a validated parent survey, staff survey, data completeness measures and interviews.


Primary outcome: parent satisfaction 'with communication of clinical information and involvement in care'. Secondary outcomes: parent-staff interactions, staff workload, data completeness. Baseline survey data will be obtained from clinical service evaluation preceding the intervention. Baseline data completeness will be derived from the NNRD. During the intervention, surveys will be administered biweekly and data completeness assessed daily. We will analyse outcomes using run charts and partially paired statistical tests. Parent and staff interviews will explore information exchange and the communication tool's impact.


This study will evaluate the impact of a parent co-designed intervention on communication with parents in neonatal care and the completeness of routinely recorded electronic clinical data. Better use of routinely recorded clinical data provides the opportunity to improve parent satisfaction and increase the research utility of such data, benefiting clinical care.

Ethics and dissemination:

Reviewed and approved by the West Midlands-South Birmingham REC (18/WM/0175).

Registration number:



neonatology; patient perspective; qualitative research

Conflict of interest statement

Competing interests: SS has received research grants from the National Institute of Health Research (NIHR), the NIHR CLAHRC NWL, Rosetrees Trust and CW+ charity. NM is Director of the Neonatal Data Analysis Unit at Imperial College London. In the last 5 years NM has served on the Board of Trustees of the Royal College of Paediatrics and Child Health, David Harvey Trust, Medical Women’s Federation and Medact; and is a member of the Nestle Scientific Advisory Board. NM has received research grants from the British Heart Foundation, Medical Research Council, National Institute of Health Research, Westminster Research Fund, Collaboration for Leadership in Applied Health and Care Northwest London, Healthcare Quality Improvement Partnership, Bliss, Prolacta Life Sciences, Chiesi, Shire and HCA International; travel and accommodation expenses from, Nutricia, Prolacta, Nestle and Chiesi; honoraria from Ferring Pharmaceuticals and Alexion Pharmaceuticals for contributions to expert advisory boards, and Chiesi for contributing to a lecture programme. CG is funded by the UK Medical Research Council (MRC) through a Clinician Scientist Fellowship award. He has received support from Chiesi Pharmaceuticals to attend an educational conference; in the past 5 years he has been investigator on received research grants from Medical Research Council, National Institute of Health Research, Canadian Institute of Health Research, Department of Health in England, Mason Medical Research Foundation, Westminster Medical School Research Trust and Chiesi Pharmaceuticals. IA, SK, WC, MN, TW, DB.

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