“The idea of bringing together clinicians, patients and carers to discuss research priorities seems obvious – why shouldn’t all those affected have a chance to jointly discuss frustrations about the things we don’t know, and aspirations for the future?”
Irenie Ekkeshis - Patient involved in the Sight Loss and Vision PSP
The James Lind Alliance (JLA) believes that
- addressing uncertainties about the effects of a treatment should become accepted as a routine part of clinical practice
- patients, carers and clinicians should work together to agree which, among those uncertainties, matter most and deserve priority attention.
Research on the effects of treatments often overlooks the shared interests of patients, carers and clinicians. As a result, questions that they all consider important are not addressed and many areas of potentially important research are therefore neglected. The JLA exists to help address this imbalance.
Even when researchers address questions of importance to patients and clinicians, they often fail to provide answers that are useful in practice. Another purpose of the JLA therefore, is to address the mismatch between what researchers want to research, and the practical information that is needed day-to-day by patients and health professionals.
The JLA method, described in the JLA Guidebook, is designed to change the way research funding is granted, and to raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them. We also describe these research questions as 'evidence uncertainties'.
The National Institute for Health and Care Research (NIHR) funds the infrastructure of the JLA. This includes the recruitment and training of JLA Advisers, management of enquiries, communication activity, and working with JLA Advisers to support and uphold the principles and methodology of the JLA. The NIHR does not normally fund JLA Priority Setting Partnerships.
Supporting the PSPs throughout the process
JLA Advisers are independent consultants who support and guide PSPs as neutral facilitators, to make sure that the process is followed in a fair and transparent way.
History of the JLA
The JLA was established in 2004 in the UK, with the first PSP completed, in Asthma, in 2007. It is named after a pioneer of clinical trials, James Lind.
Your opinion counts
People who have been involved in PSPs say their work has made a difference in many ways and has increased awareness of health issues and empowered patients.
About JLA PSPs
Priority Setting Partnerships (PSPs) enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research.
JLA templates and useful documents
Setting up a Priority Setting Partnership - some questions answered
Template timeline of PSP activities
How do I set up a PSP?
If you are interested in setting up your own Priority Setting Partnership, it is important that you understand the steps and the costs involved.
What do we mean by evidence uncertainty?
Evidence uncertainties are questions about healthcare that cannot be answered by existing research. These might be questions about particular treatment options, methods of care, or diagnostic tests. The JLA definition of an evidence uncertainty is that:
- no up-to-date, reliable systematic reviews of research evidence addressing the uncertainty exist. A systematic review combines evidence from existing research studies - for examples visit The Cochrane Collaboration
- up-to-date systematic reviews of research evidence show that uncertainty exists.
Many JLA PSPs now extend their scope beyond identifying and prioritising simply 'treatment uncertainties' and include other healthcare interventions like prevention, diagnosis, rehabilitation, care, and service organisation and delivery. The JLA recognises that a systematic review may not always be the best source of evidence for every topic area or type of uncertainty. Many of these other areas will require different evidence checking, extending beyond searching for systematic reviews.
The PSP process
The impact of PSPs
PSPs have the potential to impact on the participants, the coordinating organisations, the public profile of the conditions they are focused on and on the research that gets done.