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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
  1. Susanna Sakonidou1,
  2. Izabela Andrzejewska1,
  3. Sophia Kotzamanis2,
  4. Wendy Carnegie3,
  5. Mable Nakubulwa3,
  6. Thomas Woodcock3,
  7. Neena Modi1,
  8. Derek Bell3,
  9. Chris Gale1
  10. BUDS Project Steering Group
    1. 1Neonatal Medicine, Imperial College London, London, UK
    2. 2Parent Representative, Chelsea and Westminster Hospital, London, UK
    3. 3NIHR CLAHRC for Northwest London, London, UK
    1. Correspondence to Dr Susanna Sakonidou; s.sakonidou{at}


    Introduction 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.

    Methods 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.

    Analysis 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.

    Discussion 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 ISRCTN62718241.

    • neonatology
    • patient perspective
    • qualitative research

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    • Collaborators Project Management team: Chris Gale, Clinical Senior Lecturer in Neonatal Medicine, Imperial College, London; Susanna Sakonidou, Clinical Research Fellow, Imperial College, London; BUDS steering group: Izabela Andrzejewska, Senior Neonatal Research Nurse, Imperial College, London; Wendy Carnegie, Improvement Science Manager, NIHR CLAHRC NWL; Lucy Culshaw, Senior Research Engagement Officer, Bliss National Charity for the Newborn UK; Kelvin Dawson, Parent of neonatal patient; Bethany Hamps, Lead Neonatal Outreach Nurse, Chelsea and Westminster Hospital, London, UK; Sophia Kotzamanis, Parent of neonatal patients, Parent Representative and National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Northwest London (NWL) Improvement Leader Fellow; Aga McDaniel, Parent of neonatal patient; Matt Wilkinson, Parent of neonatal patient. Academic supervisors: Derek Bell, Professor of Acute Medicine Imperial College London and NIHR CLAHRC Programme Director; Chris Gale, Clinical Senior Lecturer in Neonatal Medicine, Imperial College, London; Neena Modi, Professor of Neonatal Medicine, Imperial College, London. Statistical support: Mable Nakubulwa, Research Associate and Statistician, NIHR CLAHRC NWL; Thomas Woodcock, Public Health and Information Intelligence Co-Lead, NIHR CLAHRC NWL. Other collaborator support: Sarah-Ann Burger, Head of Research, Picker Institute Europe; Zoe Chivers, Former Head of Services for Bliss National Charity for the Newborn UK; Shu-Ling Chuang, Consultant Neonatologist and Service Director, Chelsea and Westminster Hospital, London, UK; Caroline Lee-Davey, Chief executive, Bliss National Charity for the Newborn UK; Rebecca Davies, Neonatal Matron, Neonatal Intensive Care Unit, Chelsea and Westminster Hospital, London, UK; Liz Evans, Mental and Physical Wellbeing Theme Lead and Delivery Programme Manager, NIHR CLAHRC NWL; Rachel Matthews, Patient and Public Engagement and Involvement Theme Lead, NIHR CLAHRC NWL; Mehali Patel, Former Research Engagement Officer for Bliss National Charity for the Newborn UK; Alan J Poots, Former Principal Information Analyst, NIHR CLAHRC NWL; Ganesh Sathyamoorthy, Assistant Director for Partnerships and Business Development, NIHR CLAHRC NWL; Mark Thomas, Consultant Neonatologist, Chelsea and Westminster Hospital, London, UK.

    • Contributors CG and SS conceived this study. The first draft of the manuscript was written by SS. NM, TW, WC and CG edited and reviewed the manuscript. It was approved by the Better Use of Data to improve parent Satisfaction (BUDS) Project Steering Group. This article presents independent research supported by the National Institute for Health Research (NIHR) and the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) programme for Northwest London. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

    • Funding This work was supported by a peer-reviewed National Institute of Health Research Doctoral Research Fellowship, awarded to SS (DRF-2017-10-172) and a Rosetrees Trust grant, awarded to SS (A1653).

    • 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.

    • Patient consent for publication Not required.

    • Ethics approval This study has been reviewed and approved by the West Midlands - South Birmingham REC (18/WM/0175). We will disseminate our results through Bliss: for babies born premature or sick (The National Charity for the Newborn UK), conferences and peer-reviewed journals.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available upon reasonable request.

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