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THE JAMES LIND ALLIANCE

Tackling treatment uncertainties together

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How the James Lind Alliance Works

What the JLA does
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

See the latest James Lind Alliance information leaflet (pdf, 242.24KB)

Click here to hear Sally Crowe explaining what the JLA does, and click here to watch a video of Katherine Cowan describing the JLA's approach to stakeholder involvement in research priority setting.

To find out how to establish a Priority Setting Partnership, please visit the JLA’s Guidebook: click here.

 

Why patients’, carers’ and clinicians’ treatment 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.

Research on the effects of treatments often overlooks the shared interests of patients and clinicians. As a result, questions they both consider important are not addressed.

The pharmaceutical and medical technology industries and academia play an essential role in developing new treatments. However, their priorities are not necessarily the same as those of patients and clinicians. For this reason many areas of potentially valuable research are neglected.

For example when patients, rheumatologists, physiotherapists and general practitioners were asked to identify their priorities for research on the management of osteoarthritis of the knee, there was little enthusiasm for the studies of drugs that the pharmaceutical industry typically supports. Instead, patients and clinicians wanted more rigorous evaluation of the effects of physiotherapy and surgery, and better assessment of the educational and coping strategies that might help patients to manage this chronic, disabling and often painful condition (Tallon et al. Lancet 2000;355:2037-40).

 

The UK Database of Uncertainties about the Effects of Treatments
As part of the process of identifying treatment uncertainties, the JLA works closely with an online resource called the UK Database of Uncertainties about the Effects of Treatments (UK DUETs).
UK DUETs has been established to publish uncertainties about the effects of treatment. This means these uncertainties cannot currently be resolved by referring to reliable up-to-date systematic reviews of existing research evidence.

The aim is to make uncertainties explicit and help those prioritising research in the UK to take account of the information needs of patients, carers and clinicians. UK DUETs is part of NHS Evidence, provided by the National Institute for Health and Clinical Excellence (NICE).

UK DUETs draws on three main sources to identify uncertainties about the effects of treatments:

  • patients', carers' and clinicians' questions about the effects of treatments
  • research recommendations in reports of systematic reviews and clinical guidelines
  • ongoing research, both systematic reviews in preparation and new original studies

To find out more, go to www.library.nhs.uk/duets.


Further reading

Fenton M, Timimi H, Chalmers I (2006). Development of the Database of Uncertainties about the Effects of Treatments (DUETs): a resource to help identify priorities for new research, September 2004 – January 2005

Developing a UK DUETs Module 2009

The Research Cycle - The James Lind Alliance, another way of thinking




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