Working with the priorities
James Lind Alliance Priority Setting Partnerships (PSPs) and other groups often do further work with the identified research priorities, developing them with different people or encouraging researchers to set up investigations in those areas.
In December 2016, Autistica launched a call for proposals from researchers to address the number one priority from the Autism PSP. Read more about all of the work Autistica is doing to fund the priorities of people involved in the PSP.
Whilst the Cystic Fibrosis PSP was being carried out, a group set up by the United States Cystic Fibrosis Foundation (the US CF Foundation) was conducting a similar engagement exercise, and the two groups have worked together. The US CF Foundation were looking for research questions which could be answered through their patient registry. Any questions which should be answered through trials were sent to their trials funder, and this has informed a list of ‘areas of encouragement’ in the current round of Clinical Pilot and Feasibility Awards. There is about a 50% overlap with the JLA Cystic Fibrosis PSP’s Top 10; further validating their findings, and increasing the chances of finding answers to those priorities.
Following publication of their Top 10 in 2017, the PSP has also been asked to join a joint US / UK consensus programme on anti-microbial resistance in CF, and is helping to understand parent and patient understanding of resistance. This links with question number 9 in their Top 10.
Furthermore, the PSP has been given funding from the UK Cystic Fibrosis Trust to conduct ‘James Lind 2’! The plan is to select four questions from the Top 10 and explore them in greater detail with the Cystic Fibrosis community, through online surveys and video focus groups.
In 2017, The Royal College of Emergency Medicine invited its college members and fellows to apply for research grants, welcoming those particularly themed around the recently published Emergency Medicine PSP Top 30 priorities.
In December 2017, the Canadian Frailty Network announced a 2018 Catalyst Grant Competition, requesting research proposals that directly address one or more of the Top 10 Canadian frailty research priorities from the PSP.
In 2017, Mesothelioma UK and the British Lung Foundation announced that they were inviting applications for research grants, welcoming 'applications that aim to tackle one of the priority areas identified by the James Lind Alliance Mesothelioma Priority Setting Partnership'. Award decisions will be made in Autumn/Winter 2018.
The MS Society’s JLA PSP results are very much at the heart of their work. They were used to inform the MS Society's Research Strategy and are explicitly referred to in the strategy. The submission process for the MS Society's research grants requires applicants to outline which, if any, of the JLA priorities their proposal addresses, with applications judged by their fit with the Research Strategy, the JLA PSP results and the organisational strategy (see guidance document, p6 and p18). The MS Society is commissioning a number of projects to address the PSP results, for example priority 6 (vitamin D) and priority 4 (fatigue).
In 2017, the National Cancer Research Institute (NCRI) Brain Tumour Clinical Studies Group published a strategy document, describing the shared priorities for research identified by the Neuro-oncology PSP as being a key focus for future research. You can read more about this here, in a PDF shared with the kind permission of Michael Jenkinson. It was published in Neuro-oncology Practice in August 2017.
Palliative and end of life care
Marie Curie used the long list of priorities from the Palliative and end of life care PSP to inform their funding call in November 2015. A record number of outline proposals were submitted to the call and you can read about the 9 projects funded as a result of the call here.
In October 2016, Marie Curie ran a research conference, with the theme of out of hours care, which was the number one priority from the PSP. Further work was done with the PSP priorities to identify what the priority areas for palliative care research in Ireland are. The Greater Manchester CLAHRC worked with the palliative and end of life care priorities to find out which were of key interest locally.
Also in October 2016, Dr Annmarie Nelson published 'Beyond the questions' a thematic analysis of the survey responses received by the Palliative and end of life care PSP. The themes in the report provide insight into the experiences of palliative and end of life care from personal and professional perspectives and highlight many issues that have the potential to be addressed by social science research.
Joint PSP working
The VIDem summit brought together patients, carers, support organisations and health professionals to review the list of research priorities most relevant to people living with both dementia and visual impairment from the Dementia and Sight Loss and Vision PSPs.
A group of medical research charities continues to work together to share experiences in taking forward their Top 10 priorities and communicating their PSP results to researchers and research funders. They arranged a workshop for researchers in the area of incontinence, as this was an area that featured in the Top 10s of a number of their PSPs and will publish a report on this soon.