Research Priorities for Stillbirth: Process Overview and Results from UK Stillbirth Priority Setting Partnership
For which topic were research priorities identified?
In which location was the research priority setting conducted?
Europe - United Kingdom
Why was it conducted at all?
Original research has an important role to play in the reduction of stillbirth, but compared to other pregnancy outcomes stillbirth remains under-researched. Therefore, to address this gap in research, further studies on stillbirth are needed. To date, there has been no involvement of bereaved families or frontline healthcare professionals in the prioritization of topics for stillbirth research.
What was the objective?
to enable parents, families and clinicians to identify research priorities and to agree a ‘top 10' list of priorities by consensus
What was the outcome?
a list of 11 research questions
How long did the research prioritization take?
May 2014 - February 2015
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: setting up PSP: steering group established. Step 2: collecting research priorities: via survey: steering group developed survey to identify unanswered questions relating to stillbirth, participants were asked to identify up to 10 uncertainties relating to stillbirth, 1275 potential research question submitted, additionally 16 questions identified through searches of relevant NICE, SIGN and RCOG guidelines. Step 3: data collation: inclusion and exclusion criteria for responses determined, steering group reviewed submissions, removed duplicates, formulated indicative questions, literature searches carried out for 361 proposed questions, resulting in 300 questions, generating shortlist by steering group: greater weighting was given to questions suggested by more than one group of participants followed by questions suggested by more than one individual and suggested questions that agreed with guideline recommendations were prioritized, approach yielded a total of 48 questions that were carried forward. Step 4: interim ranking: via survey, participants were asked to select (up to) 10 most important research questions from the list, top 25 questions taken forward. Step 5: final prioritization: workshop: ranking the 25 priorities through series of small group discussions
Which stakeholders took part?
Parents, healthcare professionals. Survey: 574 participants: 32% parents and 50% professionals: predominantly midwives (22.8%) and obstetricians (9.9%). Interim ranking: 1118 participants: 67% professionals and 33% parents, families or friends. Workshop: members of steering group and representatives from partner organizations: 14 professional representatives (obstetricians, perinatal pathologists, neonatologists and midwives) and 11 parents' representatives (bereaved parents, charity workers and medical advisers to charities).
How were stakeholders recruited?
The first survey was publicized by partner organizations through websites, print and social media. The prioritization survey was publicized by partner organizations.
Were stakeholders actively involved or did they just participate?
Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of representatives of relevant professional and parents' organizations (British Maternal and Fetal Medicine Society, British and Irish pediatric Pathology Association, The Royal College of Midwives, Department of Health, Maternal and Fetal Health Research Centre, Manchester, UK, Sands (Stillbirth and Neonatal Death Charity, London, UK), Tommy's, Holly Martin Stillbirth Research Fund, and National Maternity Support Foundation - (Jake's Charity)). The members developed the survey, were involved in data processing and interim ranking and participated in the workshop.