The PSP Process
Stage 1: Establishing the partnership
Using the methodology established by the James Lind Alliance (JLA) the Most Premature Babies PSP is seeking to identify and prioritise 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 seeks to identify 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 will be 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 will be 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 want to hear from you (again)!
Once we reach this stage, a follow-up survey to prioritise the identified uncertainties will be disseminated online for completion.
Respondents will be asked to rank the unanswered summary questions and the most highly ranked questions in each track will be taken forward to the workshops.
Stage 5: Priority setting workshops
Workshops will be held, facilitated by the James Lind Alliance. Up to 25 patients, parents/carers, charities/partner organisations and healthcare professionals will be invited to each workshop for a day of discussion and ranking, to determine the top 10 questions for research.
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 held to determine the top 10 questions that require a clinical trial to answer them. This will involve reviewing the ranked priorities, which may include those outside the top 10 ranked uncertainties/priorities, to determine which unanswered questions can be made amenable to answer within a clinical trial. All participants will declare their interests.
