The JLA facilitates Priority Setting Partnerships. These bring patients, carers and clinicians together to identify and prioritise for research the treatment uncertainties which they agree are the most important. The JLA believes that:
addressing uncertainties about the effects of treatments should become accepted as a much more routine part of clinical practice
patients, carers and clinicians should work together to agree which, among those uncertainties, matter most and thus deserve priority attention
What are uncertainties?
The JLA definition of a treatment uncertainty is that:
No up-to-date, reliable systematic reviews of research evidence addressing the uncertainty about the effects of treatment exists
up-to-date systematic reviews of research evidence show that uncertainty exists
It can include other health care interventions, including prevention, testing and rehabilitation.
To help ensure that treatments do more good than harm, gaps in knowledge about their effects - uncertainties - must be identified, and those deemed sufficiently important must be addressed in research. Research on the effects of treatments is usually led by researchers or funders. This can mean that it can fail to address questions that matter to patients and to the clinicians to whom patients look for help. This is why the JLA process focuses on patients and clinicians.
It is important to ensure that the identified treatment uncertainties are genuine uncertainties, and have not been answered by existing research.
Who and what are the steering group?
The steering group is responsible for coordinating and implementing the activity of the PSP. Drawing on members’ expertise and networks, the steering group will help encourage membership to the wider PSP and, where members have the capacity and expertise, will carry out the practical work needed to collate the interim and final priority setting exercises. The steering group is also responsible for ensuring research funders are made aware of the final top ten uncertainties.
Membership of the steering group includes representatives of organisations which can reach and advocate for patients and clinicians, as well as JLA staff. Like the rest of the PSP, steering group members are expected to participate in the priority setting exercise.
The steering group comprises of 10-12 individuals from professional and patient groups.
What does the steering group commit to?
Members of the steering group will need to agree the resources, including time and expertise, that they will be able to contribute to each stage of the process. These stages include:
publicising the initiative to potential partners
publicising and participating in an initial awareness meeting
developing and distributing information and forms to gather uncertainties
collecting and collating uncertainties
checking uncertainties against existing systematic reviews
entering confirmed uncertainties into UK DUETs (a database to track questions)
managing interim priority setting
collating and aggregating interim prioritised uncertainties
publicising and participating in the final priority setting exercise
publicising the final top 10 uncertainties as research questions to funders
Steering group members should be prepared to approach and utilise their established contacts and networks.
Who forms the PSP?
Any interest group/society/community who has an interest in Hairloss in the UK that the steering group know and can approach to ask for the survey to be completed and invite individuals to any focus groups or workshops.
Why is it needed?
Aim to publish top ten research questions and process as a scientific paper
Partnership between clinicians, patients and carers to ensure common goal
Use results to approach funding bodies
To fund a top ranked research question as a UK multicentre, randomised controlled trial
What resources are needed?
Time- typically 12-18 months
Enthusiasm and support
Promoting and advertising the surveys
What is the process of PSP?
Survey 1- collating uncertainties
Submit your top research questions/uncertainties
Patients/ carers/ clinicians
Steering group analyse
Exclude ‘unknown knowns’
Collate similar questions and refine to 20-50 questions
Survey 2- Ranking of uncertainties
Rank in order of importance
Nominal group technique to produce top ten research questions
Thoughts from the Eczema PSP
I was on the steering committee and there was a total of five meetings, including the final meeting. Like you, I am only a volunteer, so I cannot commit limitless time.
There is no doubt in my mind that the PSP raised the profile of Eczema during the time it was being done and has provided a pool of useful potential future research which can be cited as having patient value.