Andy
Retired committee member
[ETA: The published version can be found here, Research priorities for ...(ME/CFS): the results of a James Lind alliance priority setting exercise, 2022, Tyson et al]
This being announced/launched today at the CMRC conference, see UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020 for discussion of that, and given the potential importance of it I thought it would be worth creating this new thread about it.
From http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps.htm
Committee statement.
This being announced/launched today at the CMRC conference, see UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020 for discussion of that, and given the potential importance of it I thought it would be worth creating this new thread about it.
From http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps.htm
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:
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.
- 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.
Committee statement.
We, the committee, have been contacted about the forum taking part in the Priority Setting Partnership process. We feel that this is something that, in principle, it would be important for the forum to be part of, but at this moment we are still trying to clarify the details of our potential involvement, which is why we haven't brought it to the forum membership yet.
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