By Rob Squire, Research Manager, James Lind Alliance

Published: 10 October 2024

Launched 20 years ago, the James Lind Alliance (JLA) is a non-profit initiative that brings patients, carers and health and care professionals together in Priority Setting Partnerships (PSPs). These PSPs identify and prioritise the areas of research that matter most to people affected by the health condition or area of focus.

So far, about 40% of AMRC member charities have been involved in over 40 PSPs, leading, sitting on the PSPs Steering Group, or funding the partnerships. Once a group or individual approaches us with a PSP topic suggestion, we provide support and guidance for setting up the PSP and allocate a JLA Adviser to help guide the process.

What do PSPs do?

Once established, PSPs bring patient, carer and clinician groups together on an equal footing, to identify questions that can’t be answered by existing research, produce a Top 10 list of jointly agreed research priorities, and ensure that this is widely disseminated to researchers and research funders.

PSPs are usually delivered within 12-18 months. They consult as widely as possible with their communities via an initial survey to gather the questions that people would like answered. From the survey responses, each PSP Steering Group will draw up a list of summary research questions. These are then prioritised in a shortlisting survey. The outcome of that survey provides a list of important questions to be discussed and ranked by patients, carers and clinicians at a priority setting workshop, where the group comes to a consensus.

What impact do PSPs have?

Since 2004, over 165 PSPs have been completed, with 20 to 30 new partnerships starting each year. You can find the list of PSPs, their Top 10 priorities, and examples of their impact on our website. Many charities involved in PSPs have used the Top 10 priorities to inform their future research funding strategies and have reported long-lasting collaborations across their sector.

PSPs have the potential to impact on the people who participate in them, the organisations that coordinate them, on the public profile of the conditions they focus on and, of course, on the research that is delivered.

DEBRA UK will use the priorities identified in its current PSP on Epidermolysis Bullosa (EB) to plan its next research strategy, ensuring that it delivers projects that are most important to the EB community and have a life-changing impact on the treatments or services available to patients.

Marie Curie led a PSP on Palliative and End of Life Care in 2015, which involved more than 30 other organisations. The survey had over 1,400 participants, informing research funding calls by Marie Curie and the National Institute for Health and Care Research, and leading to policy and practice changes such as improved bereavement support in Wales and changes to care planning in Scotland. Because only 0.23% of all health-related research funding is spent in this area, targeting funding directly to areas that make a difference to people is even more important.

Almost 10 years on, Marie Curie is carrying out an update of the original PSP enabling it to check in with people affected by dying, death and bereavement to find out which of the original priorities are still important and what new research priorities there should be. 

How can I get involved in a PSP?

Interest in PSPs is continuing to grow internationally, in countries including Australia, Canada, Ethiopia and Uganda.

If you would like to discuss the possibility of running a PSP, the JLA Coordinating Team would be happy to hear from you. More information can be found on the JLA website and you can e-mail us at  [email protected].

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