Alopecia UK is proud to be involved with the leading UK clinicians to work in collaboration and over the next few months to form a steering group and establish a ‘Hairloss Priority Setting Partnership’, in conjunction with the James Lind Alliance (JLA), who bring patients, carers and clinicians together to identify and prioritise the top 10 uncertainties, or 'unanswered questions', about the effects of treatments that they agree are most important.This information will help ensure that those who fund health research are aware of what matters to both patients and clinicians.
The JLA facilitates Priority Setting Partnerships, who believe that patients, carers and clinicians should work together to agree which, among those uncertainties, matter most and thus deserve priority attention. As well as, addressing uncertainties about the effects of treatments should become accepted as a much more routine part of clinical practice.The steering group will coordinate the Priority Setting Partnership, organise its activities and will be looking to achieve:
• a strategy for ensuring collaboration between patient, carer and clinician groups
• sources of funding to run the Priority Setting Partnership
• resources to undertake the process of checking the uncertainties and preparing them for entry into UK DUETs (The UK Database of Uncertainties about the Effects of Treatments)
• resources for the day-to-day running of the Partnership
• the anticipated outcomes of the process, including plans for dissemination
• publicising the initiative
• checking and collating the uncertainties
• taking the final priorities to research funders
Why are we doing this?
Alopecia UK for the past three years has been building strengths and networks within the research community. Alopecia UK is a small voluntarily charity, but we feel that we now in a position to make a positive difference and the hard work done over the past few years can have real benefit. Following a recent survey to our community, we all agree, that research should be our top priority followed by raising awareness and support. Participating in a ‘Hairloss Priority Setting Partnership’ will achieve all three aims.
We have received peer feedback from The Eczema and The Vitiligo Society, who both have undergone a priority setting partnership and contributed to suggesting topics for research. This brought people together with no previous research experience or knowledge, who just wanted answers and to feel they can contribute to research in some way, get the research they want and not led by drug companies who main motive is, naturally, profit. This has reaped rewards for vitiligo who were successful in a major research funding bid and awarded £1.8m.
In order for funding bids to be a success, it has to be demonstrated that patient groups, patients and carers have had involvement. Traditionally, research on the effects of treatments is usually led by researchers or funders. This can mean that it can fail to address questions that matters to patients and to the clinicians to whom patients look for help. This is why the JLA process focuses on patients and clinicians and leads to change the way research funding is granted, with a view to raising awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them.
We look forward to informing you on when the Steering Group has formally been formed and when your active participation will be required to lay the foundations for UK research.
Jackie Tomlinson, Trustee Alopecia UK