Childhood Neurological Conditions Priority Setting Project

The role of the Priority Setting Project (PSP) is to identify questions that have not been answered by research to date, and then to prioritise these. The first stage is to ask patients, carers and clinicians, often via an online survey, for unanswered questions, we define these unanswered questions as 'uncertaincies', about the area focussing on ways to improve the health and/or wellbeing of children with neurological conditions about which there is uncertainty of the effectiveness of the intervention, therapy or procedure. These questions are then assessed to check they are in scope for the PSP and are checked and verified as true uncertainties. An interim prioritisation exercise then takes place, before a priority-setting workshop is convened where participants debate and finally arrive at a Top 10 list of research priorities.

The eventual aim is to turn these priorities into research questions, and for members of the Steering Group to work with researchers and research funders to obtain funding for that research. The Steering Group membership must be a balance of patients, carers and professionals. It is agreed that for the Childhood Neurology PSP, the aim will be for 5 patient/carer representatives and 9 healthcare professionals being on and invited to Steering Group meetings. All members will be asked for their input for decisions to be made.

The PSP is planned to last 18 months running from October 2019 and ending in March 2021. The James Lind Alliance (JLA) support the PSP as Advisers and neurtral facilitators. Ensuring that the process is followed in a fair, transparent way, with equal input from patients, carers and clinicians and their representatives

The Childhood Neurological Conditions PSP is funded by BPNA

Please find an example list of childhood neurological conditions here

Timeline: 

 

October 2019

  • Steering Group and Expert Panel formed alongside the James Lind Alliance
  • First meeting to start the PSP

November 2019 - January 2020

  • Agree a Protocol to be submitted to the JLA website
  • Contact stakeholders (Charities) to be involved in the PSP
  • Design a questionnaire which will be piloted
  • Refine questionnaire for official launch

February 2020 - April 2020

  • Launch survey and publically promote

May 2020 - August 2020

  • Filter survey replies and categotrise
  • Identify research recommendations

September 2020 - October 2020

  • Develop interim prioritisation survey
  • Pilot prioritisation survey

November 2020 - December 2020

  • Launch prioritisation survey and publically promote  
  • Agree final shortlist of questions to take to workshop(s)

January 2021 - February 2021

  • Schedule date for final prioritisation workshop(s)
  • Recruit participants
  • Chair and facilitate with JLA

March 2021

  • Desseminate workshop(s). Finalise top 10 questions
  • Submission of full list of workshop questions in order of priority. Engagement summary and engagement summary and question verification form to the JLA for publication on the JLA website
  • Publish final PSP report