100 JLA PSPs: What's the impact on patients and carers?

In 2004 when the James Lind Alliance (JLA) was established, I wonder if anyone could have foreseen that 16 years on we would be celebrating the achievement of 100 completed Priority Setting Partnerships (PSPs) and the impact they have had on those involved, particularly the patients and carers who have contributed?

JLA PSPs provide a role for patients and carers to contribute at a strategic level to the research agenda:

“The James Lind Alliance demonstrates the value of engaging patients in setting priorities and defining unanswered research questions to avoid the waste that occurs if questions are not relevant, do not have value, lead to duplication, wasted resources, and ineffective adoption of findings."

Virginia Minogue and Bill Wells: Patients and the public are essential to reducing waste, BMJ Opinion, August 2019

But at an individual level, involvement in a PSP can be a positive and rewarding experience. A patient involved in the Teenage and Young Adult Cancer PSP said about the PSP[1]:

“I always say that I didn’t want my diagnosis to go to waste, and now something tangible came out here that could help other people in the future. That feels amazing.”

Irenie Ekkeshis, who was involved in the Sight Loss and Vision PSP said:

“It was the first time that I realised that patients should and could have a say in the whole healthcare ecosystem… it was a very skilfully managed group, and this helped us to respect, reflect and understand and build on each other’s points of view. It’s quite a deliberative process and I thought it was amazing, I really did. I walked out the room at the end and I felt three feet taller.”

JLA PSPs establish and agree their research priorities by undertaking a rigorous process that takes an average of around 18 months and involves hundreds or even thousands of people in every partnership. You can find out more about the JLA in this PDF summary of the steps involved.

Everyone involved in the JLA never takes for granted the important contributions that patients and carers make to this. At this time when we’re reflecting on 100 lists of priorities for research, we thank all of the patients and carers involved throughout the years, and look forward to working with many more of you in the years to come. If you would like to get in touch with the JLA team, please email us on jla@southampton.ac.uk.

[1] From An evaluation of young people's involvement in the Teenage and Young Adult Cancer PSP (.PDF)