What people say
Encouraging more research in a particular health area is usually the objective that James Lind Alliance Priority Setting Partnerships (PSPs) have when they begin identifying what future research is important to patients, carers and clinicians. However, people who have been involved in PSPs say their work has made a difference in other ways too. It has increased awareness of the health issues they are interested in and encouraged relationships with other stakeholders in the area. Patients have felt empowered by the contributions they have made to PSPs and it has changed the way in which patients and health professionals view and understand each other.
"Great support despite the language difference. The PSP would not be possible without the JLA"
Organiser of a PSP in Germany
"This process is an excellent way to elevate the voices that are underrepresented in healthcare research. Our JLA Adviser was absolutely dedicated to this value and it permeated the entire process."
Canadian PSP organiser
"The James Lind Alliance priority setting partnerships are a good example of how patients and the public have an important role at a more strategic level in identifying research priorities. 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
“It’s been a huge privilege to understand what matters most to people with Type 2 diabetes. These priorities are a really important step in helping us achieve our goal of maximising the benefit of research for people with diabetes. The priorities will allow us, and researchers across the UK, to think strategically to deliver the knowledge that could significantly improve the lives of people with Type 2 diabetes in the future.”
Dr Elizabeth Robertson, Director of Research, Diabetes UK
"I honestly had such a good day with you all, I can safely say it was one of the best experiences I had to date (and I've had quite a few). I agree with Katherine's words in that it was meaningful involvement and inclusive, and I think a lot of people could take a leaf out of your book. I don't believe it's possible to truly progress scientifically, unless there is co-production and involvement, at all stages of research."
Adult Social Work PSP workshop participant
“The results of our Palliative and end of life care Priority Setting Partnership with the James Lind Alliance have triggered a number of conversations with other charities interested in funding research in palliative and end of life care and have directly led to a joint call with the Chief Scientist Office in Scotland and the Motor Neurone Disease Association.”
Sabine Best, Head of Research, Marie Curie
“I found that being involved has given me back an element of control over my illness. This is so much more than I imagined I could ever have done when I first became ill. The workshop left me feeling that we patients have an important contribution to make.”
Irenie Ekkeshis, Sight Loss and Vision PSP
“It was a fair partnership - the researchers, clinicians and public contributors didn't always agree, but when this happened they explained their reasons and we were able to move forward based on a shared understanding. Sometimes the public contributors changed their opinions based on what they had heard, and sometimes the researchers or clinicians changed their opinions. I was really impressed by this; the 'them and us' position that you hear about was completely dissolved...It was a wonderful opportunity to see how the JLA process works and to experience true involvement; where public contributors, researchers and clinicians listen to and learn from each other.”
PSP Steering Group member
“After my husband died I wanted to use my experience of this dreadful disease to try and help shape future treatments and further research for mesothelioma patients. I found it extremely refreshing that patients, carers, health professionals and clinicians were all working together to identify the top research priorities.”
Heather Foot, Mesothelioma PSP
“The week after the JLA workshop, a patient came to see me in a clinic, and wanted a change of antipsychotic medication because of sexual dysfunction. Without the experience of the JLA process, it is unlikely that this issue would have been afforded as much weight as it was.”
Keith Lloyd, Schizophrenia PSP
“This has changed how I practice medicine. It has changed my understanding of what it means to listen to patients. It has changed the language I use when I speak with them. Most importantly it has changed my vision of how to deliver the care we give them. It has made it our vision.”
Noémi Roy, Rare Inherited Anaemias PSP
"Having been involved in several PSPs over the years, including vitiligo, eczema, cellulitis, psoriasis and lichen sclerosus, I am a big fan of the JLA and the work that it does. To me, getting the right question is all important in research. If you have an important question that people would like to know the answer to, then everything else that follows will be worthwhile."
Professor Kim Thomas, Co-Director of the Centre of Evidence Based Dermatology, University of Nottingham.
“I initiated a JLA PSP in Lyme disease in 2010. Our biggest difficulty was getting clinicians involved - they were convinced there were no uncertainties. However, the quality and rigour of the JLA process enabled a sea change in the Department of Health’s view of Lyme disease which was immensely useful in moving things forward."
Stella Huyshe-Shires, Chair, Lyme Disease Action
"Robust and well-respected process that is genuinely inclusive and promotes genuine partnership working to identify research priorities of importance to service users and healthcare professionals."
PSP Steering Group member
"It was inclusive and felt like a bottom-up approach - it was practical and the priorities arrived at were meaningful. The next stage is crucial to ensure that the essence of the priorities is not lost once the research questions are developed."
PSP Steering Group member