Having focused for the last two weeks on aspects of writing a change in topic this week, the work of the James Lind Alliance and the Priority Setting Partnerships they facilitate to prioritise unanswered research questions about the effects of treatment in specific conditions.
The James Lind Alliance (JLA), established in 2004, is funded by NIHR and based in the NIHR Evaluation, Trials and Studies Co-ordinating Centre at the University of Southampton. The rationale informing its work is the need to ensure that questions important to patients, carers and healthcare professionals working clinically are not neglected by researchers and that when research is focused on questions of clinical importance the results are transferable to practice. This is achieved through Priority Setting Partnerships(PSPs)
JLA has developed a robust approach to PSPs and publish a guidebook detailing the processes and protocol followed. Facilitated by JLA but funded and organised by the group commissioning the PSP the partnerships bring together clinicians, patients and carers to identify and prioritise important uncertainties about the effects of treatment that could be answered by research. Whilst people from a non-clinical background may be involved in the process they are not involved in voting on the priority questions to ensure that the priorities are firmly based on the priorities of patients, carers and service providers.
The output from each PSP is a list of jointly agreed research priorities, usually Top 10s, which are published and disseminated widely. PSPs have been undertaken on topics including depression, autism, dementia, Parkinson’s disease, palliative and end of life care, multiple sclerosis and schizophrenia.
To illustrate the process a PSP on palliative and end of life care was initiated by Marie Curie working in partnership with 30 other organisations. Over 1,400 people, including those in the last years of life, carers, and health and social care professionals participated in the PSP and the top 10 priorities, along with another 18 ranked priorities were published in 2015.
To give you an insight into the process in this instance a steering group was convened in 2013 and undertook a period of consultation to request questions and uncertainties of clinical importance relating to the care, support and treatment of people who are likely to be in the last few years of life including questions about care and support for carers and families. The consultation methods included membership meetings, emails, postal and web-based questionnaires, social media and focus group work.
The questions generated by the initial consultation were collated into indicative questions and, a crucial step in the process, a review of current literature was undertaken to ensure that the questions had not already been answered. Once it was established which questions were unanswered a final prioritisation process was undertaken to reach the final top 10 list.
Details of all of the PSPs can be found on the JLA website and, where appropriate links to specific sites that were established as part of the process. If you are developing a research proposal it is well worth becoming familiar with the outputs of any relevant PSPs as they not only influence the funding streams of NIHR and major medical research charities but they also provide strong evidence to justify the focus of your proposal. Similarly if you are interested in priority setting partnerships the guidebook and templates produced by JLA will be of interest.
A little bit of history to end with. James Lind was a scottish naval surgeon who in the 1700s pioneered the first clinical trail in his work on the prevention of scurvy. Twelve scorbutic sailors were divided into 6 groups, all had the same diet but they were given different ‘supplements’ cider, sulphuric acid, vinegar, seawater, a spicy paste and barley water or 2 oranges and 1 lemon. His results showed that oranges and lemons were better than other treatments.