Infant Journal
for neonatal and paediatric healthcare professionals

Neonatal Research Priority Setting Partnership: help wanted

Katie Evans
Neonatal Research Priority Setting Partnership Project Co-ordinator and Clinical Research Fellow in Neonatal Medicine at Chelsea and Westminster Hospital
katie.evans7@nhs.net

Chris Gale
Academic Neonatologist and Neonatal Society Meeting Secretary

The Neonatal Research Priority Setting Partnership is a national project, currently underway, that aims to identify and prioritise research questions that could be answered in practice-changing clinical trials. In February 2022 over 250 research questions were submitted via an online portal from a wide range of neonatal stakeholders including parents, nurses, allied health professionals, doctors and researchers. These research questions will now be ranked by parents, nurses, allied health professionals, doctors and researchers in a Delphi survey to ensure research reflects the priorities of neonatal stakeholders and inform key research organisations, like the National Institute for Health Research (NIHR). We need your help to prioritise these research questions – please get involved with this project and have your voice heard.

Background

One in seven newborn infants will require neonatal care,1 but there is wide variation in practice2 and an incomplete evidence base for many commonly used treatments.3 The gold standard for assessing the effectiveness of a healthcare intervention is a methodologically robust randomised controlled trial.4 With such a wide range of treatment uncertainties it is well recognised that research prioritisation has an important role, and such prioritisation processes have been previously undertaken in the fields of preterm birth,5,6 stillbirth,7 diabetes in pregnancy8 and pregnancy hypertension.9 Such projects have been important in identifying broad topics of research interest, but these have often not been amenable to testing in practice-changing clinical trials. This project aims to focus on more detailed research questions that are testable in clinical trials, and hence invites submissions in a population, intervention, comparison, outcome (PICO) format.

Aims and methods

Research should strive to be relevant to the population it serves, and therefore a steering group was formed that encompasses parents, patients, healthcare professionals and researchers (TABLE 1). The steering group agreed on the scope of the project and has played a valuable role in ensuring research questions have been submitted by diverse stakeholders. This project is divided into four stages (FIGURE 1) encompassing question identification, question ratification, a prioritisation process and dissemination of a ranked list of PICO questions. The ultimate goal is to disseminate a list of prioritised neonatal research questions that can inform the development and design of practice-changing neonatal trials within the UK.

TABLE 1 Steering group members. Key: BAPM=British Association of Perinatal Medicine; NIHR=National Institute for Health Research; RCPCH= Royal College of Paediatrics and Child Health; ODN=operational delivery network.

FIGURE 1 The project is divided into four stages encompassing question identification, question ratification, a prioritisation process and dissemination of results.

Current progress

Throughout February 2022 the project was widely publicised, and over 250 research questions were submitted by a wide range of stakeholders. A question building tool assisted submission of questions using the PICO structure. With the support of the British Association of Perinatal Medicine (BAPM), targeted webinars were run to further support both parents, ex-neonatal patients and clinicians with developing a PICO question. Submitted questions spanned a wide range of topics including common clinical practice variations, nutrition strategies, novel medications and family-integrated care initiatives. Over half of all submitted questions have come from stakeholders who do not identify as doctors, highlighting the involvement of a wide range of different groups, and moving forward we are particularly keen to diversify further.

How to get involved

The next stage of this process is prioritising the submitted research questions – this is critical and allows health professionals like you, to inform what research questions are important and should be addressed in clinical trials. We would welcome anyone with an interest in neonatal care to get involved with the Neonatal Research Priority Setting Partnership. It will be simple to participate through an online Delphi survey where you will be asked to score research questions on their importance to you. During the first round of this two-round process, there will be the opportunity for you to submit new research questions that would then be prioritised in subsequent rounds.

For full details of how to get involved and to sign up go to www.bapm.org/researchqs

References
The full text of this article is available to subscribers in text, and in Tablet/iPad format and as a PDF file.

Please subscribe and log in to see the full article.

Keywords
neonatal jaundice; newborn; term admission; infant feeding; transcutaneous bilirubinometer

Also published in Infant:

VOLUME 15/ISSUE 4, JULY 2019
Phototherapy at home for the treatment of neonatal jaundice: a patient-centred pilot project
Phototherapy is a well-established procedure and the mainstay of treatment for significant neonatal jaundice. Usually, phototherapy is delivered in hospital, typically requiring a hospital stay of a few days. This article describes a pilot project to introduce phototherapy for the management of neonatal jaundice in clinically stable preterm and term infants with haemolytic disease of the newborn using a phototherapy blanket at home.

Read more...