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.  

The UK Clinical Research Collaboration Tissue Directory and Coordination Centre

UK biobanks are contributing to JLA PSP priority areas and the UKCRC Tissue Directory and Coordination Centre has published examples of this.

Alcohol-related Liver Disease

In June 2018, The British Society of Gastroenterology (BSG) launched its new research strategy. The strategy highlighted the work done by their five Clinical Research Groups (CRG) and identified the research priorities of the Liver CRG to be the Top 10 questions identified by the NIHR and BSG funded PSP. 

Anaesthesia (Canada)

In November 2019, The Canadian Anesthesiologists’ Society (CAS) invited its members to apply for research grants and encouraged applicants to review the Canadian Anesthesia PSP research priorities.

Anaesthesia and Perioperative Care

In February 2024, the National Institute of Academic Anaesthesia (NIAA) issued a funding call based on key areas from their research strategy, and explained that "the strategy is also informed by the results from the James Lind Alliance/NIAA Anaesthesia and Perioperative Care Priority Setting Partnership which concluded in 2015".

In August 2022, the Vascular Anaesthesia Society of Great Britain & Ireland (VASGBI) and the Association for Cardiothoracic Anaesthesia and Critical Care (ACTACC) issued a joint call for research project applications up to the value of £70,000, which must demonstrate how the proposed project meets the aim of the research strategy of both funders, which was also informed by the results of the JLA PSP in Anaesthesia and Perioperative Care.

Autism

The top priority for future autism research from the PSP was to identify what interventions could improve the mental health of autistic people.  In a further development of this priority, an international priority setting exercise was conducted, supported by the JLA, to identify priorities in relation to understanding and preventing suicide in autistic people.  The report from this exercise was published in June 2021.

Following the Autism PSP, Autistica has been funding its own research and working closely with the National Institute for Health and Care Research to maximise the impact of the charity's work. “We used the outcomes of the Priority Setting Partnership to shape Autistica’s research strategy and continue to use them in our policy work,” said Dr Cusack. “The priorities have also been picked up by other funders, including in the US, so the exercise is having a far reaching impact on autism research.”

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.

Cellulitis

In 2018, the UK Dermatology Clinical Trials Network invited applications for funding from researchers who wanted to develop research ideas around the Cellulitis and Lichen Sclerosus PSP Top 10s.  You can also read more on their information sheet.

Coeliac Disease

In June 2022, Coeliac UK launched a call for basic science research underpinning the Top 10 priorities.  They also launched a call for research aimed at children and young people to address the Top 10.

In May 2018 Coeliac UK launched a call for research, explaining that applications that specifically address the PSP priorities 'will be considered more favourably'.  Following this, Coeliac UK and Innovate UK announced funding of research around PSP priorities in February 2019.

Cystic Fibrosis (2017) and the refreshed Cystic Fibrosis PSP (2022)

In February 2024, the Cystic Fibrosis Trust advertised funding of £700,000 - £800,000 for researchers wishing to form Strategic Research Centres.  They welcomed applications that address the JLA refreshed CF research priorities for these centres and other clinical research.

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.

Dementia (Canada)

In June 2019, the priorities set by the Dementia PSP in Canada were referred to in the Dementia Strategy for Canada, published by the Government of Canada.

Dementia

In June 2022, an NIHR Evidence themed review around 'Continence, dementia, and care that preserves dignity' was published. The themed review identifies the impact of continence problems on people living with dementia and their carers, as well as ways to improve continence care at home. This review was prompted by the report from the continence workshop organised by a group of JLA PSPs that all had continence issues within their lists of research priorities.

The Research Programme in Dementia Care was developed in response to the Northern Ireland Dementia Strategy, Improving Dementia Services in Northern Ireland (2011).  The research priorities for this Programme were identified through consultation with key stakeholders including service users, health professionals and commissioners, using the topics identified by the JLA PSP in Dementia.  Key stakeholders were asked to prioritise five topics in order of importance which they thought were most salient to the care of patients with dementia and their carers in Northern Ireland.  The most frequently mentioned topics were then used to inform the research call.  A report published in November 2015 describes and evaluates the work of the programme.

Emergency Medicine

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. 

Endometriosis

A team in America used the data collected from the Endometriosis PSP interim prioritisation survey and combined it with data from a survey conducted at the 13th World Congress of Endometriosis in 2017, where 298 international healthcare practitioners and scientists ranked the top 72 questions.  The data was then analysed to compare the priorities for respondents personally affected by endometriosis with those of clinicians/scientists focusing on endometriosis.  The results of the comparison can be found here.

Epilepsy

Epilepsy Research UK's research strategy is informed by the UK Epilepsy Research Priority Setting Partnership.

Foot Health

In January 2022, the charity Great Foundations announced that it was making up to £250,000 available for projects that address one or more of the Foot Health PSP priorities.

Frailty (Canada)

In December 2017, the Canadian Frailty Network announced a 2018 Catalyst Grant Competition.  The competition was designed to fund innovative research, knowledge translation or quality improvement proposals that directly addressed one or more of the priorities from the PSP.  12 projects were funded as a result.

Hypertension (Canada)

The Cochrane Circulation and Breathing Network used the Hypertension (Canada) PSP priorities in an exercise to help identify Cochrane reviews which should be prioritised for publication and updating.  The exercise was designed to confirm that Cochrane focuses its efforts on reviews which have been cited as being of the highest importance.

Inflammatory Bowel Disease

In 2022, Crohn's & Colitis UK offered funding awards of up to £100,000 for researchers to investigate specific JLA PSP priorities.

In June 2018, The British Society of Gastroenterology (BSG) launched its new research strategy. The Inflammatory Bowel Disease Clinical Research Group identified a current top five priorities, which were those priorities identified by the PSP, but had not yet been funded or received a commissioned call. 

Lichen Sclerosus

In 2018, the UK Dermatology Clinical Trials Network invited applications for funding from researchers who wanted to develop research ideas around the Cellulitis and Lichen Sclerosus PSP Top 10s.  You can also read more on their information sheet.

Mesothelioma

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.

Multiple Sclerosis

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. The MS Society is commissioning a number of projects to address the PSP results, for example priority 6 (vitamin D) and priority 4 (fatigue).

Neuro-oncology

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.

Occupational Therapy

In October 2020 the Royal College of Occupational Therapists opened its Research Foundation grants scheme for applications for the 2021 funding round saying "This year, all grant applications must include a proposal that aligns with the recently announced Top 10 priorities for occupational therapy research in the UK."  

An article published in April 2022 describes how the Royal College of Occupational Therapists has responded to the priorities so far.

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.  They have since run other similar funding calls highlighting the PSP priorities.  In 2018 Marie Curie made over £1.25 million of research funding available through the Marie Curie Research Grants Scheme, in partnership with the Motor Neurone Disease Association and The Brain Tumour Charity.

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.

Physiotherapy

In July 2019, the Chartered Society of Physiotherapy Charitable Trust announced that funds of up to £295,000 would be granted in 2019/20 in a special one-off research call to fund one of the Physiotherapy PSP top priorities.

Psoriasis

In November 2018 and 2019, the Psoriasis Association asked for grant applications from researchers, saying that "Applications that also address one of the Psoriasis PSP Top 10 research priorities will be looked on favourably".

Scoliosis

The British Scoliosis Research Foundation offers research grants, with applications being assessed in January and August each year.  The grants application information is accompanied by the final report of priorities from the Scoliosis PSP.

Stillbirth

In 2016, SANDS, the stillbirth and neonatal death charity, launched a call for research with particular emphasis on the priority areas from the Stillbirth PSP.

Stroke

In July 2022, The Stroke Association launched a call for research which clearly addresses priorities for stroke research within the Top 10 topics from the Stroke JLA PSP.  

In March 2022, NIHR's Programme Grants for Applied Research Programme advertised a themed call, jointly with the Stroke Association, for research around areas of interest following the Stroke PSP.  This NIHR blog also explains more.

Once the Stroke PSP had established its priorities, the Stroke Association, in partnership with KTN, held the ‘Action on stroke research priorities’ event. The event invited industry, academia, clinicians, funding and supporting organisations with expertise in stroke research, innovation and care to share their knowledge and develop new collaborations and partnerships to address evidence uncertainties established in the Stroke PSP 

Teenage and Young Adult Cancer

In December 2021, Teenagers and Young Adults with Cancer launched a call for funding applications around priorities 1, 2 and 9 in its TYAC Late Effects Research Grant round.

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 worked together to arrange 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.  The report from the workshop was published in August 2018.