James Lind Alliance
Encyclopedia
The James Lind Alliance is a non-profit making initiative which was established in 2004. It has been established to bring patients and clinicians together to identify and prioritise the unanswered questions about 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 James Lind Alliance is part of the James Lind Initiative http://www.jameslindlibrary.org and is principally funded by the Department of Health (United Kingdom)
and the Medical Research Council (UK)
. Over 200 organisations and individuals are currently affiliated to the James Lind Alliance.
, while the Urinary Incontinence Priority Setting Partnership was led by the Bladder & Bowel Foundation http://www.bladderandbowelfoundation.org and the Cochrane Incontinence Group http://www.incontinence.cochrane.org, part of the Cochrane Collaboration
.
Priority Setting Partnerships work together to gather uncertainties about the effects of treatment, to be entered into the Database of Uncertainties about the Effects of Treatment (DUETs) http://www.library.nhs.uk/duets, part of the National Health Service
(NHS) National Library for Health http://www.library.nhs.uk. The uncertainties are all checked to ensure they cannot be answered by existing knowledge, research or sources of information.
The uncertainties then go through a process of prioritisation, which aims to culminate in a top ten list of priorities for research, shared by patients, carers and clinicians. To date, the process has been completed for Asthma
and Urinary Incontinence
.
One of the James Lind Alliance’s strategic aims is to develop a body of research supporting the concept of patient involvement in research priority-setting, and the group is involved in commissioning a range of research. It has been argued that patient and carer involvement in research should be standard practice, with academic status taking second place to patient interests http://www.bmj.com/cgi/content/extract/337/jul04_1/a212?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=lester+firkins&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT.
. James Lind, a Scottish naval surgeon, decided to confront this uncertainty by treating his patients within a clinical trial comparing six of the proposed remedies. His trial showed that oranges and lemons were dramatically better than the other supposed treatments.
Department of Health (United Kingdom)
The Department of Health is a department of the United Kingdom government with responsibility for government policy for health and social care matters and for the National Health Service in England along with a few elements of the same matters which are not otherwise devolved to the Scottish,...
and the Medical Research Council (UK)
Medical Research Council (UK)
The Medical Research Council is a publicly-funded agency responsible for co-ordinating and funding medical research in the United Kingdom. It is one of seven Research Councils in the UK and is answerable to, although politically independent from, the Department for Business, Innovation and Skills...
. Over 200 organisations and individuals are currently affiliated to the James Lind Alliance.
Background
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 essential roles in developing new treatments, but their priorities are not necessarily the same as those of patients and clinicians. For this reason many areas of potentially valuable research are neglected. Bringing patients and clinicians together to prioritise questions in treatment uncertainty is thought to be rare.How the James Lind Alliance works
The James Lind Alliance brings together patients and patient representatives, carers and clinicians, as individuals or represented by groups, to form Priority Setting Partnerships, focusing on specific health conditions. For example, the Asthma Priority Setting Partnership was led by Asthma UK and the British Thoracic SocietyBritish Thoracic Society
The British Thoracic Society was formed in 1982 by the amalgamation of the British Thoracic Association and the Thoracic Society. It is a registered charity and a company limited by guarantee.-Function:...
, while the Urinary Incontinence Priority Setting Partnership was led by the Bladder & Bowel Foundation http://www.bladderandbowelfoundation.org and the Cochrane Incontinence Group http://www.incontinence.cochrane.org, part of the Cochrane Collaboration
Cochrane Collaboration
The Cochrane Collaboration is a group of over 28,000 volunteers in more than 100 countries who review the effects of health care interventions tested in biomedical randomized controlled trials. A few more recent reviews have also studied the results of non-randomized, observational studies...
.
Priority Setting Partnerships work together to gather uncertainties about the effects of treatment, to be entered into the Database of Uncertainties about the Effects of Treatment (DUETs) http://www.library.nhs.uk/duets, part of the National Health Service
National Health Service
The National Health Service is the shared name of three of the four publicly funded healthcare systems in the United Kingdom. They provide a comprehensive range of health services, the vast majority of which are free at the point of use to residents of the United Kingdom...
(NHS) National Library for Health http://www.library.nhs.uk. The uncertainties are all checked to ensure they cannot be answered by existing knowledge, research or sources of information.
The uncertainties then go through a process of prioritisation, which aims to culminate in a top ten list of priorities for research, shared by patients, carers and clinicians. To date, the process has been completed for Asthma
Asthma
Asthma is the common chronic inflammatory disease of the airways characterized by variable and recurring symptoms, reversible airflow obstruction, and bronchospasm. Symptoms include wheezing, coughing, chest tightness, and shortness of breath...
and Urinary Incontinence
Urinary incontinence
Urinary incontinence is any involuntary leakage of urine. It is a common and distressing problem, which may have a profound impact on quality of life. Urinary incontinence almost always results from an underlying treatable medical condition but is under-reported to medical practitioners...
.
One of the James Lind Alliance’s strategic aims is to develop a body of research supporting the concept of patient involvement in research priority-setting, and the group is involved in commissioning a range of research. It has been argued that patient and carer involvement in research should be standard practice, with academic status taking second place to patient interests http://www.bmj.com/cgi/content/extract/337/jul04_1/a212?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=lester+firkins&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT.
Who was James Lind?
The James Lind Alliance is named after a pioneer of clinical trials, James Lind (physician) (1716–1794). Two hundred and fifty years ago, there were many conflicting ideas and unanswered questions about how to treat the deadly disease scurvyScurvy
Scurvy is a disease resulting from a deficiency of vitamin C, which is required for the synthesis of collagen in humans. The chemical name for vitamin C, ascorbic acid, is derived from the Latin name of scurvy, scorbutus, which also provides the adjective scorbutic...
. James Lind, a Scottish naval surgeon, decided to confront this uncertainty by treating his patients within a clinical trial comparing six of the proposed remedies. His trial showed that oranges and lemons were dramatically better than the other supposed treatments.
External links
- James Lind Alliance http://www.lindalliance.org
- James Lind Library http://www.jameslindlibrary.org