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Updated: Dec 14, 2025

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
What happens after James Lind Alliance Priority Setting Partnerships? A qualitative study of contexts, processes and
Kristina Staley1, Sally Crowe2, Joanna C Crocker3
1TwoCan Associates, Ross on Wye, HR9 7DL UK.
Background:
The James Lind Alliance (JLA) supports priority setting partnerships (PSPs) in which patients, carers and health professionals collaborate to identify a Top 10 list of research priorities. Few studies have examined how partnerships plan for the post-prioritisation phase, or how context and post-PSP processes influence the fortunes of priorities. This evaluation aimed to explore these questions.
Methods:
We selected a diverse sample of 20 interviewees who had knowledge of 25 PSPs. Thirteen interviewees had led a PSP, either from a university, patient organisation or charity. Three were patients who had taken part in a PSP workshop. Four others, three researchers and one funder, had worked with JLA PSP priorities to develop research proposals. We analysed the data thematically, exploring how success was understood and achieved.
Results:
The JLA PSPs had different histories, funding sources, goals and stakeholders. Whilst their focus was on generating priority research topics, PSPs' wider impacts included enhanced status and greater confidence for individuals, as well as relationship-building and network strengthening for the organisations involved. To follow through on a Top 10, additional work was needed to refine broad priority topics into research questions and match them with appropriate funding sources. Commitment to post-PSP action from partners appeared to increase the chance that priority topics would be followed through to funded studies. Academic publications could alert researchers to a PSP's outputs, but not all PSPs had the capacity to produce them. A Top 10 list potentially influences funding decisions through direct funding, themed calls or as a prompt in open calls. Influence on funders appears to depend on alignment between a priority and the funder's remit, culture and values.
Conclusion:
The history and context of a JLA PSP have a major influence on its impact. Our findings suggest that there is no universal formula for success, but that greater resource and attention should be given to what happens after prioritisation. Further research is needed on what works best in what circumstances. Overall, we conclude that a wider cultural change in the research world is needed for JLA PSPs to achieve their goal of shaping the research agenda.
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