The PSP Process
Stage 1: Establishing the partnership
Using the methodology established by the James Lind Alliance (JLA) the Most Premature Babies PSP identified and prioritised evidence uncertainties or 'unanswered questions' relating to the most premature babies born before 25 weeks gestation (about 4 months early). We therefore established a steering committee of parents, adult patients, and healthcare professionals from across Australia and the UK and have engaged with a wide range of partner organisations to raise awareness of the PSP through their members and supporters.
Stage 2: Initial survey
The initial survey, launched October 2022, identified evidence uncertainties through a consultation process with all stakeholders, and asked one simple question: What questions would you like to see answered by research, focusing on the care and treatment of the most premature babies born before 25 weeks gestation, and/or the mental health and wellbeing of parents and carers of the most premature babies?
Stage 3: Evidence checking
The survey responses were analysed, removing any out-of-scope questions and those already answered in existing literature, to generate a long-list of unanswered but answerable summary questions.
These were then split into two parallel tracks depending on whether they relate to the care and treatment of the most premature babies born before 25 weeks gestation, or the mental health and wellbeing of parents and carers of the most premature babies
Stage 4: Prioritisation surveys - we heard from you again!
This stage involved a follow-up survey to prioritise the identified uncertainties which was disseminated online for completion in September 2023.
Respondents were asked to rank the unanswered summary questions and the most highly ranked questions in each track were taken forward to the final priority setting workshops.
Stage 5: Priority setting workshops
Workshops will bewere held and, facilitated by the James Lind Alliance in December 2023. Up to 3025 patients, parents/carers, charities/partner organisations and healthcare professionals will be invited toattended each workshop on both days for a day of discussion and ranking. , to determine the On the second day of the workshop the top 10 questions for research were determined by the group collectively.
Stage 6: PSP Follow on stage
A further workshop, involving the Steering Group along with interested patients, parents/carers, healthcare professionals, and researchers, will be was held in October 2024 to determine the top 10 questions that require further development a clinical trial to answer them and identify potential funding avenues. This will involved reviewing the ranked priorities, which may included those outside the top 10 ranked uncertainties/priorities, to determine which unanswered questions can be made amenable to answer within a clinical trial or program of research. All workshop participants will declare their interests.
