Priority Setting Partnership with the James Lind Alliance

A new research project

We are excited to announce that Action for Stammering Children are collaborating with other stammering charities and professional bodies in a new research project. The aim of the project is to determine the most important questions to be answered in research related to stammering.

This type of project is known as a Priority Setting Partnership (PSP) in the world of research, and we are able to work on this project with generous funding from the Woodroff Benson foundation. The Priority Setting Partnership requires an external mediator and chair from a separate organisation, not related to stammering, to direct the meetings, provide guidance on each of the steps of the PSP and make sure all opinions are voiced too. In this case, we are working with the James Lind Alliance (JLA). They were set up in 2004 with the aim of making sure that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives. Therefore, they fit with what Action for Stammering Children, STAMMA, RCSLT etc. set out to achieve.

How does the Priority Setting Partnership work?

In order to decide which questions get prioritised, Action for Stammering Children asked representatives from different organisations within the stammering community to come together as part of a Steering Group. The members of the steering group include other charities, professional and industry bodies, as mentioned above, as well as young people who stammer, parents of children who stammer, speech and language therapists, teachers and researchers. The steering group meets every 6 weeks over a period of 12-18 months.

Once the steering group is established and there is fair representation from each area of the stammering world, they put together a survey which asks participants to say what they think is the most important question for researchers to answer. Unlike a typical survey, which would ask participants for answers, this survey will seek out questions which participants would like answered.

Once the survey is created and thoroughly fine combed by the steering group, it is then sent out to the general public. The survey gets sent out to as many people as possible, to ensure the Steering Group collects the most responses. These responses then get reviewed, analysed, categorised and then turned into a list of priority questions for research, otherwise known as ‘evidence uncertainties’. This part of the projects usually takes the longest as it is the most complex part.  

After sorting, the list of questions is checked against existing evidence to see which questions are already answered. Working with our communities of those who stammer, their families and carers and those who work with them, these are then prioritised to produce a top 10 list of research questions. This final list of priority questions is then disseminated to researchers and funders and the wider public.

This is a key aspect of the whole project as it shows that people in the world of stammering want to look into these aspects of research. It is more likely that then these will be the questions investigated by researchers.

You can read more about the whole Priority Setting Process on the James Lind Alliance website where they have created a JLA Guidebook.