James Lind Alliance

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• James Lind Alliance
• Tackling treatment uncertainties together

James Lind, 1716-1794
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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
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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

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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

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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

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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

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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

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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

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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

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How could priorities influence research agenda?

• Commissioning

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Barriers to commissioning

• Reluctance to stifle creativity and the next
  breakthrough
• Culture of researchers know best
• Its difficult to turn a priority topic into a
  research question
• Lack of capacity
• Fear of poor quality response

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Conclusions

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