Joint production of research priorities to improve the lives of those with childhood onset conditions that impair learning: the James Lind Alliance Priority Setting Partnership for ‘learning difficulties’

Abstract

ObjectivesTo engage children and young people with conditions that impair learning, their parents/carers and the health, education, social work and third sector professionals to identify and prioritise research questions for learning difficulties.DesignProspective surveys and consensus meeting guided by methods advocated by the James Lind Alliance.SettingScotland.MethodsThe Priority Setting Partnership came together through discussion and collaboration between the University of Edinburgh, Scottish charity The Salvesen Mindroom Centre and partners in the National Health Service, education services and the third sector. A steering group was established. Charity and professional organisations were recruited. Suggested questions were gathered in an open survey and from research recommendations by the National Institute for Health and Care Excellence and Scottish Intercollegiate Guidelines Network Guidance. Suggested questions and recommendations were summarised into 40 indicative research questions. These indicative questions were verified as uncertainties from research evidence. Respondents each nominated up to 10 questions as research priorities in an interim survey. The 25 highest-ranked questions from the interim survey were prioritised at the final priority setting workshop.Participants367 people submitted suggestions (29 individuals affected by learning difficulties, 147 parents/carers and 191 professionals). 361 people participated in the interim prioritisation (41 individuals, 125 parents/carers and 195 professionals). 25 took part in the final workshop (5 young people, 6 parents and 14 professionals).ResultsTop three research priorities related to (1) upskilling education professionals, (2) best education and community environment and (3) multidisciplinary practice and working with parents. Top 10 included best early interventions, upskilling health, social and third sector professionals, support for families, identifying early signs and symptoms, effective assessments and strategies against stigma and bullying and to live independent lives.ConclusionsResults will now be a resource for researchers and funders to understand and resolve learning difficulties and improve the lives of those affected with childhood onset conditions that result in learning difficulties.

Top 10 (plus 1) research priorities for expectant families and those with children to age 24 months in Alberta, Canada: results from the Family Research Agenda Initiative Setting (FRAISE) priority setting partnership project

“…Findings from this PSP complement findings from other paediatric research PSPs that have focused on Open access single issue priority setting, such as premature birth, 21 stillbirth, 22 chronic pain, 23 neurodisabilities 24 or learning difficulties. 25 Despite the breadth in populations and that most existing PSPs were conducted in the UK, research priorities identified in these partnerships related to access to information, mental and emotional health, and healthy relationships, suggesting that these themes are consistently important to parents. One notable exception to the general trend of conducting PSPs with specialised populations is a Canadian PSP that developed research priorities for preventative care of children aged 0-5 years.…”

Rapid prioritisation of topics for rapid evaluation: the case of innovations in adult social care and social work

“…The rapid priority setting exercise was delivered in four months' elapsed time, from commencing initial planning to reporting the priorities to NIHR. This rapid exercise took a lot less time than most JLA priority setting processes which usually take 12-18 months (from design through to comprehensive checking processes) [25][26][27]. Project management was a key factor in achieving speed.…”

“…A multi-disciplinary project team was established to design and run the project, including coordination and administration support, evaluation and research expertise, social care and social work research expertise, and priority setting methods experience. JLA PSPs are similarly operationally supported by a project team but, unlike our rapid adaptation, they are also overseen and led by a steering group involving service users and practitioners [25][26][27]. The team for the rapid prioritisation was able to focus on the innovation identification and priority setting and convene meetings quickly and regularly, including overseeing the shortlisting.…”

“…However, undertaking a rapid prioritisation did affect the ability to engage with service users in the earlier stages of the process (as is recommended in JLA PSPs) (e.g. [25][26][27]). For example, no individual service users submitted innovations to the consultation seeking candidate innovations.…”

“…In a full JLA priority setting exercise, the consultation to collect people's 'unanswered questions' lasts at least three months (e.g. [25][26][27]). A further two to three months are then spent collating that data, creating summary questions and checking them against systematic reviews and guidelines, in order to remove questions that do not require further research.…”