Guest blog by Sandra Regan, Patient Involvement and James Lind Alliance Project Manager, NIHR Oxford Biomedical Research Centre (BRC)
This time last year, Sophie Petit-Zeman wrote a blog about how best to ensure that our James Lind Alliance (JLA) priority setting partnerships (PSPs) really do make a difference to what research is done. “The last steps matter too”. And now, the JLA itself has started to collate the evidence across all its work.
JLA PSPs make a difference when the research priorities they identify are turned into funded studies, and the results of that research used to inform care delivery. They can also make a difference to the lives of the people taking part, and to the way that clinicians treat their patients.
PSPs are a kind of “pop-up” activity: Steering Groups come together for 12-18 months to develop priorities that are important to patients, carers and health and social care professionals in particular health conditions or topics. They follow the JLA process under the guidance of an accredited Adviser, and at the end they report on what the priorities are and what limitations they found, and provide their findings to potential funders. In many cases, that’s it: the Steering Group disbands, their job is done. In some cases the priorities are adopted into the research strategy of a professional organisation or a research group; in other cases a core group – or a really engaged lead clinician or membership organisation – continues to promote the priorities to health and social research funding bodies and charities.
As part of the reporting process, all unanswered questions are published on the JLA website. This means that all the questions are widely available for anyone to pick up and develop proposals for funding.
I hope that this helps you understand why tracking which priorities have been funded has presented such a challenge!
Since 2013, the JLA infrastructure has been funded by the National Institute of Health Research (NIHR). This means that the management team sits at the heart of one key funder of health research, so they know when the NIHR funds priorities from a JLA Partnership, and indeed they sometimes prioritise JLA-identified research questions into their funding streams. In many cases however, the JLA still relies on the Steering Group, or its lead, to inform them when funding is granted from other sources.
So, in the last year, the JLA management team has been gathering information on which priorities have received funding for research and published them here, together with some key quotes showing other benefits of PSPs, and information on other follow-up activities.
This is a great step towards answering the question about the extent to which JLA PSPs have impact. Here at the BRC JLA support “hub” we are delighted to see that two of the Partnerships that we have supported over the last few years are included in the list of funded research on the JLA site: priority 5 from the PSP on Surgery for Common Shoulder Problems: In patients with 3 and 4 part proximal humeral fractures what is the long term outcome of reverse total shoulder replacement compared to hemiarthoplasty (half shoulder replacement)? and priority 4 from the PSP on Spinal Cord Injury: Prevention of recurrent Symptomatic Urinary Tract Infections in Patients with Chronic Neurogenic Bladder Dysfunction: PReSUTINeB study.
We hope to see more priorities from BRC-supported PSPs listed here in future. If you were involved with a BRC-supported PSP and have information about the funding into research to address any priorities, please do let us know. Similarly, if you have a story about how your involvement has changed your clinical practice, or had an impact on your life, or information about any follow-up activities, please contact us by e-mailing firstname.lastname@example.org