James Lind Alliance Tackling treatment uncertainties together James Lind,

“As we know, there are known knowns. There are things we know we know. “We also know there are known unknowns. That is to say we know there are some things we do not know. “But there are also unknown unknowns, the ones we don't know we don't know.” Donald Rumsfeld One creditworthy contribution to posterity

How do we determine priorities? Collect uncertainties from patients/carers/ clinicians/researchers AND research literature Check that they are uncertainties and assemble in a database (probably over 200 uncertainties) Analyse database, and consult with stakeholders – what are their priorities? Aim for a shortlist of 30 uncertainties and have a workshop so that they can be debated and consensus developed reaching a ‘top ten’ uncertainties. Publish the results, to influence research agendas…

Scoping priority setting in the UK To find out: which clinical research organisations set research priorities and how they do it whether and how patients and the public are involved in this work how identified priorities influence what research gets funded

Methods A review of the websites of UK clinical research organisations – 52 included Telephone interviews with relevant staff in 22 UK clinical research funding organisations that do set priorities A literature review

Which organisations? Most were voluntary sector organisations or medical charities (49) Department of Health funded organisations (2) Research Council (1) Wide range of research topics and budgets

Making funding decisions Majority operate in responsive mode Every one uses a process of peer review to decide which applications to fund – huge variation in level of PPI in this process About 40% identify research priorities About one third say they commission research

Setting priorities – why and how? Most commonly part of research strategy – but lots of different reasons Huge range of methods used to identify priorities – linked to purpose Not often linked to JLA agenda

Do research priorities influence the research agenda? Limited evidence of influence: List of priorities are often so broad that they do not set any limits on researchers Review process does not involve assessing ‘how well a proposal fits with a research priority’

How could priorities influence research agenda? Commissioning

Barriers to commissioning Reluctance to stifle creativity and the ‘next breakthrough’ Culture of researchers ‘know best’ It’s difficult to turn a priority topic into a research question Lack of capacity Fear of poor quality response

Conclusions To make priorities count: Challenge the dominant research culture Share best practice in identifying priorities Develop and support commissioning