A new James Lind Alliance Research Priority Setting Partnership has started and we invite people to take part.
Who can take part?
Patients, carers, and healthcare professionals. If you have (or have had), or are caring for someone who has (or has had) early stage osteoarthritis (OA), or work as a health or social care professional with people who have (or have had) early stage OA….we want to hear from you.
Why should I take the survey?
This exciting initiative will be overseen by The James Lind Alliance, a non-profit making organisation funded by the National Institute for Health Research, ensuring the exercise produces an unbiased result, with equal weighting given to the views of the different participating groups. So whether your interest is personal or professional …your opinions will count.
How do I take part?
The survey is available at http://tiny.cc/3d71vx or contact the James Lind Alliance Project Manager at the Oxford Biomedical Research Centre to request a paper version (tel / voicemail 01865 223298, e-mail firstname.lastname@example.org).
Every year, about 150,000 hip and knee replacements are done in the UK because of osteoarthritis. But we still don’t know enough about which patients benefit most, when is the best time for surgery and how do we ensure that patients recover quickly and well?
A James Lind Alliance Priority Setting Partnership gathered research uncertainties from a wide range of people with osteoarthritis and health professionals that treat and look after them. There were prioritised using a James Lind Alliance approach and the results and process to achieve the Top Ten Research Priorities are detailed in this report.
Crowe Associates have piloted and delivered a new workshop for Yorkshire Research Design Service in May 2013. The combination of interactive and information sharing enabled researchers to explore and appraise different approaches to prioritisation and stakeholder engagement. Continue reading
‘Is academia meeting the needs of non-academic users of the results of research?’
The Lancet, published online 8 October 2012
Medical and public health researchers often assume that their work will be relevant to patients, health professionals, policy makers, the public, and other non-academic users of research. However, on the basis of the little available evidence, serious mismatches exist between what researchers do and what many non-academic users of research feel they need. Research agendas are determined by the priorities of research sponsors, academia, and academic researchers, and cannot be assumed to match the needs of non-academic users of research. Continue reading
The Eczema Priority Setting Partnership: A collaboration between patients, carers, clinicians and researchers to identify and prioritise important research questions for the treatment of eczema
J.M. Batchelor, M.J. Ridd, T. Clarke, A. Ahmed, M. Cox, S. Crowe, M. Howard, S. Lawton, M. McPhee, A. Rani, J. Ravenscroft, A. Roberts, K. Thomas DOI: 10.1111/bjd.12040
Eczema is a common condition, yet there are uncertainties regarding many frequently used treatments. Knowing which of these uncertainties matter to patients and clinicians is important, because they are likely to have different priorities from those of researchers and funders. Continue reading
Setting Research Priorities for Type 1 Diabetes
Diabetic Medicine, October 2012, vol./is. 29/10(1321-1326), 0742-3071;1464-5491 (October 2012). Gadsby R.; Snow R.; Daly A.C.; Crowe S.; Matyka K.; Hall B.; Petrie J.
Research priorities are often set by academic researchers or the pharmaceutical industry. The interests of patients, carers and clinicians may therefore be overlooked and research questions that matter may be neglected. The aims of this study were to collect uncertainties about the treatment of Type 1 diabetes from patients, carers and health professionals, and to collate and prioritize these uncertainties to develop a top 10 list of research priorities, using a structured priority-setting partnership of patients, carers, health professionals and diabetes organizations, as described by the James Lind Alliance. Continue reading
The James Lind Alliance approach to priority setting for prostate cancer research: an integrative methodology based on patient and clinician participation
Lophatananon A,Tyndale-Biscoe S, Malcolm E, Rippon H, Holmes K, Firkins L, Fenton M, Crowe S , Stewart-Brown S, Gnanapragasam V and Muir K.
British Journal of Urology International, 2011, Vol 108, Issue 7, p 1040 – 1043
Research in many ﬁelds of medical investigation is principally researcher and
response led. The medical industry is advancing in both treatments and technologies, but the ideas and views of both patients and clinicians are often forgotten, even though these groups clearly have a shared interest in research. Patients themselves are becoming increasingly familiar with research, particularly through the internet, and with their direct experience of disease they should be an important voice when identifying research priorities. Continue reading
Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions
Elwyn G, Crowe S, Fenton M, Firkins L, Versnel J, Walker S, Cook I, Holgate S, Higgins B, Gelder C, J Eval Clin Pract , Volume 16 , 3 (June 2010) pp.627-631
To arrive at an agreed, prioritized ranking of treatment uncertainties in asthma that need further research, by developing a collaboration of patients, carers and clinicians, facilitated by the James Lind Alliance Working Partnership between Asthma UK and the British Thoracic Society. Continue reading
Priority Setting Approaches in Treatment Uncertainties
This overview of methods for prioritisation was written several years ago to underpin development work at the James Lind Alliance (JLA).
The overview considers several well known approaches to prioritisation and consensus building such as Nominal Group Technique and Delphi consultations. Each method is summarised and the pros and cons considered. The final part of the paper makes the case for the methods chosen for the James Lind Alliance Priority Setting Partnerships. Click here for a link to the full paper.