News and publications

Ruth Unstead-Joss from the Royal College of Occupational Therapists (RCOT) explains what the Occupational Therapy Priority Setting Partnership (PSP) learnt from promoting its first survey.

Dr James Cusack, Director of Science at Autistica, describes how the charity has worked with the NIHR to address some of the autism community's priorities following completion of the Autism PSP

Success isn’t only about getting a priority research topic funded, as Sally and Kristina found to their surprise when they talked to a wide range of people with an interest in JLA PSPs. Taking part in a JLA PSP can also transform the people, the research culture and the organisations involved.

Jonathan Gower and Suzannah Kinsella joined the team as new JLA Advisers earlier in 2019. We asked them to write about their experiences so far now that they are both working with PSPs. Very appropriately, they decided on a Top 10 of what has struck them as most interesting and valuable about the JLA PSP process

Two new JLA Priority Setting Partnerships (PSPs) are now planning their work to develop locally appropriate research priorities by bringing together technical experts and experts by lived experience, regardless of social status, age, literacy level and internet access.

The Teenage and Young Adult Cancer PSP recently brought together researchers, funders and charities in a workshop to discuss the priorities and consider opportunities for funding. The Palliative and end of life care PSP is planning another workshop too, this time to focus on its number one priority around out of hours care

Professor Jackie Cassell, Director of Research and Knowledge Exchange at Brighton and Sussex Medical School, spoke to the JLA about how the school has used PSP priorities for a number of years to provide real-life research questions to help educate future doctors about research methods.

Guts UK is a charity set up to increase the levels of research into diseases of the gut, liver and pancreas. Since 1971 Guts UK has funded almost 300 projects and invested £15 million pounds into medical research. Last year, in collaboration with forCrohns, Guts UK asked researchers to put forward proposals for research on Crohn’s disease that the two charities could fund, based on the research priorities identified by the JLA PSP in Inflammatory Bowel Disease.

The Ontario Brain Institute funded the Neurodevelopmental Disorders (Canada) PSP and has spent the past year promoting the Top 10 priorities to ensure that they reach the right audiences. This includes researchers, organisations that fund research, the community, and general public.

The JLA has been collecting feedback from completed PSPs for two years. In that time, 49 individuals involved in organising PSPs have completed an online survey to tell us how they felt about the PSP process once they had published their Top 10.

Read about the research that the British Lung Foundation and Mesothelioma UK are funding in the areas around mesothelioma that were agreed as most important by people affected and those who treat them.

Randomised clinical trials are the gold standard method for gathering evidence about health and care interventions. That said, randomised trials are not perfect, and many of them run into issues through the process of trial design and delivery. The PrioRiTy II work identified the most important questions to be answered about retention of participants in clinical trials.

Coeliac UK, the national charity that led the Coeliac JLA Priority Setting Partnership, has announced funding for research projects in areas highlighted by the PSP, in collaboration with Innovate UK, the UK’s innovation agency.

Louise Ross, Clinical Consultant, National Centre for Smoking Cessation and Training, provides an update on the progress of the Electronic Cigarettes PSP.

Read about how the Heart Surgery Priority Setting Partnership (PSP) has been communicating with the patients, carers and clinicians it needs to hear from.