We have a perennial conversation in Oxford 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.
There are certainly times when I worry that the basic JLA concept – that patients, carers and clinicians are best-placed to know what research matters – is such a good one, that we do PSP after PSP to ensure we know what this research is, but don’t follow up as closely as we should on what happens next.
I’ve said in the past that each JLA PSP is only as good as the funded research, and hence, with luck and judgement, the patient benefits that follow from it. Over the years I’ve revised that view in light of extraordinary and unexpected spin offs from PSPs: the detail is for another time but they can impact on the clinicians who take part in ways that have a very immediate effect on care. But aside from this, we need to be mindful about not simply creating lists of research priorities without working hard to get them turned into funded studies.
That said, our track record isn’t bad. One of our first PSPs, in hip and knee replacement in osteoarthritis, led to Arthritis Research UK and the British Association for Surgery of the Knee committing to use the priorities to determine their research direction in this area. We are also now working with our PPI and industry committee (a group seeking to align patients’ interests with our business development work) to see whether we can link JLA priorities, from Oxford-led PSPs, or those further afield, with industry funders. And one of our new PSPs – in rare anaemias – is thinking about how best to work with funders from the start, reminding me a little of the mantra from my research days about always planning statistical analysis of the results before doing a single experiment. Indeed, it is very wise (tho undeniably complex) to think from as early as possible about who might back the research that will emerge from JLA work.
It’s heartening therefore to see the recent announcement from Marie Curie (I’ve written before about their work here) jointly with the Motor Neurone Disease Association and the Chief Scientist Office in Scotland, calling for research applications based on JLA priorities.
With the only certainties in life being death and taxes, it’s fairly staggering that the recent UK Clinical Research Collaboration Health Research Analysis showed that only 0.16% of health-related research funded in 2014 by UK charitable and government research funders was devoted to end of life care research.
Steps such as that of Marie Curie will not only help to highlight the strong possibility that this amount isn’t enough, but also address it with research into the things that really matter to those confronting the issue at close quarters. I’ll leave you with the top question from this PSP: “What are the best ways of providing palliative care outside of ‘working hours’ to avoid crises and help patients to stay in their place of choice? This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families?”
It’s chilling to think that we really can’t yet answer questions like this with any evidence. Marie Curie and a host of other interested parties have worked hard to get this far; let’s hope the research community completes the journey.