Written by Sally Crowe
What is the James Lind Alliance (JLA)?
The JLA is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians (healthcare professionals) together in Priority Setting Partnerships to identify and prioritise the unanswered questions about treatments that they agree are most important. The JLA’s work is carried out by a small number of JLA Advisers. It is coordinated and overseen by the National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC) UK.
What are JLA Priority Setting Partnerships?
Priority Setting Partnerships focus treatment uncertainties in a particular condition or healthcare issue. A treatment uncertainty is the effects of treatment which cannot currently be answered by a relevant, reliable up-to-date systematic review of existing research evidence. Partnerships consist of individuals and organisations representing patients with the condition, their carers and the healthcare professionals who treat them.
What do Priority Setting Partnerships do?
They follow a prioritisation process that results in ten interventional (treatment) uncertainties for consideration by research funders. There are five key stages:
- Defining the health/social care issue and agreeing what is in scope.
- Identifying partners for the process, awareness raising, and contracting for partnership effectiveness. This includes agreeing who does what, gaining ownership of processes and outcomes, setting timelines and considering contingencies.
- Establishing a Steering Group
- Gathering treatment uncertainties directly from clinicians, patients, and carers, via groups/ organisations/alliances, using standard methods such as surveys
- Gathering treatment uncertainties from existing UK research recommendations, including: BMJ Clinical Evidence, Clinical Practice Guidance, Cochrane Reviews, NICE/SIGN Guidance
- Uncertainties are gathered, categorised into themes, refined and similar uncertainties grouped and reworded.
- Existing evidence base checked, to establish that they are uncertainties (definition: no up-to-date, reliable systematic reviews exist OR up-to-date systematic reviews show that uncertainty exists).
- All of uncertainties are entered into UK DUETs www.library.nhs.uk/duets
- Interim phase: consultation with partners, to reduce usually hundreds of uncertainties to a manageable number (<30). Methods include electronic voting
- Once a shortlist has been agreed, it goes forward for final priority setting.
- Final phase: Priority setting workshop – all partner representatives are invited. Workshop is modest in size - 30 people, and pre-workshop packs contain contextual information as well as the short list or research uncertainties to be prioritised. Nominal group technique is used (pre-workshop individual ranking followed by rounds of small group discussion and ranking, aggregating rank order as workshop progresses). Final plenary session agrees shared ‘top ten’ treatment uncertainties, and some discussion about the research response required e.g. primary research, updated systematic review etc
Pictures from priority setting workshops in urinary incontinence and type 1 diabetes
5. Reporting and refining
- Work on priorities to fashion them into good quality research questions (Steering Group activity or workshop)
- Formally to partners, and their communities of interest
- Publish in relevant high impact journals, and patient/carer publications.
- Funding organisations and allied groups, for example, Cochrane Collaboration, National Institute for Health Research Programmes, Relevant Charitable Foundations
- What happens to the treatment uncertainties which are not prioritised or put in the top 10?
- Those uncertainties are not lost. They are still part of UK DUETs and can still be accessed by researchers and research funders.
Where can I find out more?
- Go to www.jla.nihr.ac.uk. For practical guidance on the JLA’s priority setting process, visit www.JLAguidebook.org. Or follow us on Twitter www.twitter.com/LindAlliance