Priority Setting Partnership: Childhood Stammering

What is a Priority Setting Partnership?

In collaboration with the James Lind Alliance (JLA), we are leading the first ever Priority Setting Partnership into developmental childhood stammering.

A Priority Setting Partnership (PSP) brings together patients, carers and clinicians to identify the priorities for future research into a particular health area through a systematic, highly-reputed process. PSPs help us to identify the gaps in existing research in childhood stammering, and ensure that the perspectives of those with lived experience of stammering inform the future research agenda.

Ultimately, our PSP will result in a list of Top 10 priorities for future research into childhood stammering, which have been jointly agreed by parents/carers, young people and professionals.

The PSP steering group, which is made up of individuals with experience of stammering and representatives from organisations across the stammering community, help us to drive forward this project. Our PSP steering group includes representatives from the following groups:

• Young people who stammer
• Parents/carers of children who stammer
• Speech & Language Therapists
• Teachers
• Academics
• The Royal College of Speech & Language Therapists (RCSLT)
• STAMMA
• City Lit

What have we done?

Step 1 – we invited parents/carers, young people, and education and health professionals who work with children who stammer, to share their questions about stammering.

Step 2 – we examined the existing literature to determine which of these questions had been robustly answered by research. This left us with a long list of questions that still need answering by future research.

Step 3 – we invited the stammering community to review this long list and choose the 10 questions they considered most important. We then asked them to rank their 10 questions from most to least important.

Step 4 – we held our Final Workshop at Coram in November 2023, where 22 parents/carers, young people and professionals spent a day deliberating which of the 25 questions should make it to the Top 10.

What's next?

Now, the work really begins!

We need to get the Top 10 Priorities in front of researchers, research bodies and funders to influence the future research agenda. This will ensure that future research projects are addressing the questions that will have the most meaningful impact on the stammering community.

Since our Workshop in November, we have been busy preparing to disseminate the Top 10, which are under embargo until our launch event in September 2024.

Here are some of the ways that we have started to disseminate the outcomes from the PSP (as well as a sneak preview of what more we have in store):

• We held a workshop session at STAMMAFest 2024, in which participants reflected on the 25 questions that had been deliberated at the Final Workshop and discussed the impact of the Top 10 on the stammering community.
• We will be officially launching the Top 10 at an event we are holding at UCL on 18^th September 2024. If you are interested in attending, register below.
• To ensure our Top 10 make an impact on future research, we need to spread the word about the outcomes of our PSP far and wide. That’s why we will be publishing a series of articles and blog posts in a variety of outlets in the months to come. Stay tuned for further updates!

You can keep up to date about the impact of our PSP on the JLA website.