About Priority Setting Partnerships
“This PSP has been a truly collaborative effort and everybody has had a voice. It has widened horizons and will shape clinical research for brain cancer patients and the people who look after them. This means that in future clinical research will be relevant, focused and cohesive. It's been a fabulous experience”
Helen Bulbeck, Director of brainstrust, about the Neuro-oncology PSP
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. While the James Lind Alliance (JLA) facilitates these partnerships, the funding and organising is done by the PSP itself.
Focusing on specific conditions or healthcare settings, the JLA facilitates PSPs which:
- bring patient, carer and clinician groups together on an equal footing
- identify evidence uncertainties (questions which cannot be answered by existing research) which are important to all groups
- work with all groups to jointly prioritise identified uncertainties
- produce a final list (often a Top 10) of jointly agreed research priorities, publicise them widely, and make sure that other uncertainties are recorded and available for researchers and research funders to access
- provide a rare and valuable opportunity for patients and clinicians to shape the health research agenda.
The JLA PSP process results in a Top 10. The aim of the Top 10 is to highlight important areas for research, but not necessarily to come up with the specific research questions. The Top 10 may include broader areas of importance where patients, carers and health professionals have agreed that there is a need for research. This informs researchers and research funders about priorities so that they can make their research as meaningful as possible to the people who need it.
JLA PSPs are characterised by following the method set out in the JLA Guidebook and are facilitated by a small team of JLA Advisers.
To ensure consistency, the JLA asks each PSP to conform to a set of underpinning principles. These are:
- transparency of process
- balanced inclusion of patient, carer and clinician interests and perspectives
- exclusion of non-clinician researchers from voting (they may be involved in all other aspects of the process)
- exclusion of groups or organisations that have significant competing interests, for example pharmaceutical companies
- a maintained audit trail from original submitted uncertainties, to final prioritised list
- a recognition that making priority decisions does not create new knowledge, but reviews existing evidence of uncertainty.
To find out more about the areas in which PSPs have been identifying the uncertainties which really matter, please visit the PSPs section.