Tamara joined the team as a JLA Adviser in late 2019, as part of a collaboration between the JLA and the Canadian Agency for Drugs and Technologies in Health (CADTH). She updates us on JLA work in Canada.
Our PSP team knew from the start that we would need to think “outside the box” when it came to engaging Saskatchewan residents with obstructive sleep apnea (OSA) to find out their treatment-related questions.
How do we know if a prioritisation exercise is legitimate and that the resulting priorities are credible? We can only make that judgement if things are reported transparently and comprehensively – and unfortunately for the world of research priority setting, historically this hasn’t always happened.
Richard Holt, Editor-in-Chief of Diabetic Medicine and Professor in Diabetes and Endocrinology at the University of Southampton, explains how the series of review articles for the priorities from the Type 1 and 2 Diabetes JLA PSPs came about.
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.