Title: Better Use of Data to Improve Parent Satisfaction (BUDS): a mixed method project using quality improvement methodology to improve parent experience of neonatal care.
Funder: Department of Health and Social Care

Abstract: AimTo improve parent satisfaction with communication of clinical information and involvement in NHS neonatal care.BackroundOver 80,000 babies a year in the UK require admission to hospital for neonatal care. The 2014 UK survey of Parents' Experience of Neonatal Care demonstrated parent dissatisfaction with communication of clinical information and involvement in care throughout the UK. Regular provision of routine information has been shown to improve parent satisfaction and involvement in care. All NHS neonatal units routinely record clinical information in anelectronic patient record (EPR), from which data are extracted to form the National Neonatal Research Database (NNRD) thatis used for national audit and research. I hypothesise that sharing individualised, daily, clinical EPR data in a parent-centred way will lead to higher reported parental satisfaction and greater data completeness.Design Workstream 1: What is the evidence so far There is some evidence from small single-centre studies showing that simple interventions providing regular information updates improve parent satisfaction. This workstream will systematically review all previous interventions to support the provision of routineinformation using current technology.Workstream 2: Developing and validating a questionnaire for measuring parent satisfaction Currently there is no available UK parent satisfaction questionnaire that has been validated for use while babies are receiving neonatal care. The 2014 UK survey was only validated for use by parents after babies have been discharged home. This workstream will develop a suitable questionnaire for use in this fellowship by revising and validating the 2014 survey.Workstream 3: Parent-led co-design on an app This workstream will use quality improvement methodology to interview parents and explore the information provision in NHS neonatal care, describe parents' information needs and determine how these fit with available EPR data. Parents will lead the co-design of a mobile phone app that will extract selected EPR data that match their needs, and automatically deliver them to parents' phones.Workstream 4: Piloting the app in the NHS with continual improvement This workstream will pilot the app for use by parents on the Chelsea and Westminster (CW) neonatal unit and will continually improve it by evaluating and monitoring its progress.Workstream 5: App testing and impact measurement This workstream will roll out the app at CW, allowing the measurement of its impact pre and post usage on:- Parent satisfaction: measured using the questionnaire developed in workstream 2. - NNRD data completeness: measured using data held in the NNRD. - Interactions between parents and staff: measured by interviewing parents and staff.Potential benefits to parents and the NHS- Routinely recorded EPR data provide the opportunity to transform the way parents receive and understand clinical information in an intensive care setting and improve parent satisfaction with communication of clinical information and involvement in care.- This fellowship will involve parents in developing and testing this hypothesis in NHS neonatal care. Results from this work will be applicable across NHS neonatal services and other similar intensive care settings.- Greater NNRD data completeness will result in more reliable outputs from neonatal audit, research and quality improvement projects, with the potential to improve neonatal care.

Lay abstract: Background Babies in the UK commonly need to be admitted to hospital after birth. One in eight newborns receive care on a neonatal unit every year. This experience deeply affects parents. Over a third of them develop post-traumatic stress disorder that can interfere with parent-child bonding. This is important because preterm babies who establish close bonds with their parents have a better chance of surviving, doing better academically and growing up to be more successful adults.The neonatal intensive care unit is a scary and unfamiliar environment for parents. Parents usually obtain information about their babies through discussions with doctors and nurses, which are often brief due to staff workload. I was born preterm and my mother still vividly remembers how difficult it was to obtain information from staff and how excluded that made her feel. Years later, as a neonatologist myself, I still see elements of my mother's experience. The latest 2014 UK neonatal parents survey reported dissatisfaction with communication of clinical information' and parent involvement in care'; less than half were able to speak to a doctor as much as they wanted. This emphasises the need to improve the way we communicate with parents.AimTo improve parent satisfaction with communication of information and involvement in neonatal care, by empowering parents and actively involving them in clinical information sharing. This fellowship will give parents direct access to an up-to-date summary of their baby's progress in a way they can understand, at any time, from any location, without relying on medical staff.DesignUnderstanding the Electronic Patient Record Since most UK parents have mobile phones, the obvious way to update them is using a phone application (app). Neonatal information in the NHS is already stored electronically, but is not yet available to parents. Neonatal doctors and nurses routinely record daily clinical information on every baby using an electronic patient record (EPR) system (such as weight' and amount of milk taken'). Information automatically enters the National Neonatal Research Database where it is used for neonatal research. I will work with parents to develop an app that will extract the information they want from the EPR and deliver it to their phone in an understandable way.Like other large-scale clinical data systems, information in the EPR can be incomplete or inaccurate. I want to see if the completeness of neonatal EPR information improves if clinical staff know that it is used to communicate with parents.Reviewing previous research and parent experiences I will search the existing research to find out what has already been tried to improve parent satisfaction with neonatal care. I will interview parents that have had a baby that needed neonatal care to understand how they received information about their babies, what they would have liked to have and how this fits with existing EPR information that could be provided to them.Developing an app I will develop the app with parents and Clevermed, the company that developed EPR and has already built a baby diary app, which securely links baby photos from the EPR to parents' phones. I will give the app to parents on the Chelsea and Westminster neonatal unit and work with them to improve it using their feedback.Using the app I will test the final the app with parents on the unit, measuring their satisfaction with communication of information and involvement in care before and after the app. To measure parent satisfaction I will develop a new questionnaire with parents, supported by the Picker Institute, an international charity with extensive experience in developing healthcare surveys. Finally, I will measure the app's effect on EPR data completeness, and see if it affects the interactions between parents and staff or staff workload.Patient and Public involvement Parents will play a central part throughout this fellowship. In addition to working with them to develop the app and questionnaire, they will have a key role in developing information leaflets and app manuals. Parents are also part of my research team, including a parent of ex-premature twins, a representative from Bliss (the national newborn charity) and parent advisors. As core team members they will help ensure this fellowship is parent-centred throughout, from inception to completion.Dissemination of research findings Information about this fellowship is available online via a project facebook page. Findings will also be disseminated on Bliss' facebook page. Academic outputs will be submitted to national and international journals and conferences.

Research activity codes: 5.3 MEDICAL DEVICES;7.1 INDIVIDUAL CARE NEEDS
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH