In this blog, Caroline Whiting reflects on the milestone of 100 completed Priority Setting Partnerships and the importance of this work with patients, carers and clinicians for making research relevant and useful.
The James Lind Alliance (or JLA) brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and agree the most important questions in health and care that are unanswered by research. The list of important questions usually takes the form of a ‘Top 10’. The aim of doing this is to make sure that people who fund and do health research are aware of the issues that matter most to the people who need to use the research in their everyday lives. JLA PSPs decide on 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.
James Lind – testing treatment uncertainty 300 years ago
James Lind was a pioneer of clinical trials, born 304 years ago on 4th October 1716. In the 1700s, there were many conflicting ideas about how to treat the deadly disease scurvy. James Lind, a Scottish naval surgeon, decided to confront this uncertainty by treating his patients within a clinical trial comparing the proposed remedies. He allocated two sailors to each of six different treatments for a period of 14 days. His trial showed that oranges and lemons were dramatically better than the other supposed treatments.
100 Priority Setting Partnerships later!
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
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 “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.”
Ensuring research is of real value
PSPs do have an impact on research that is funded, helping to ensure that it is of real, practical value to patients, carers and healthcare professionals, and you can read more about the research that has come about as a result of PSPs on the JLA website. The first ever PSP was about Asthma and a question about breathing exercises as a form of physical therapy for asthma was identified as being important. Professor Stephen Holgate, Steering Group member of the Asthma PSP, said “Without this coming together of patients with the research community, catalysed by the JLA, the subject of breathing exercises would never have been identified as one that received so much enthusiastic support.” After the PSP, a group of researchers studied the effectiveness of breathing training exercises taught by a physiotherapist by either instructional videos/DVDs/internet download or by face-to-face sessions in the management of asthma in adults and you can see the results of that research in this publication.
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.
Evidently Cochrane has talked about a number of JLA PSPs before. You can read more:
- Priority setting in research: what do you want to know about hearing loss?
- Top 10 priorities for research on mild-moderate hearing loss
- Hyperacusis: what do we most need to know?
- Prioritizing research into cavernoma: what matters most?
Caroline Whiting has nothing to disclose.
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The featured image was taken during the final workshop of the JLA Cavernoma PSP; we have been given permission to use the photo here but if you wish to reproduce it please apply to firstname.lastname@example.org.