In last week’s blog I mentioned that we had just seen the first of our BRC James Lind Alliance (JLA) partnerships reach its conclusion. Having been involved with the JLA since it was set up a decade ago, the approach feels as familiar as an old pair of slippers, and its ideas as comfortable. Yet last week it felt as exciting as if it were new.
The JLA was named after the eighteenth century naval surgeon credited with doing the first clinical trial in his quest to cure scurvy. A great man no doubt, but I’ve never been sure it’s a great name for the organisation: it leaves most no wiser as to what the JLA does, which is unite patients, carers and health professionals to identify and prioritise their “top 10” research questions. A lot has been written about it over the years.
The JLA approach is different from research being directed by scientists who may rarely see patients, or by the drug industry, whose aims are not always allied with patient need. To date it has worked in 20 conditions, ranging from asthma and schizophrenia to eczema and prostate cancer. We are adopting the method in Oxford to help set research priorities and the first to complete was that in hip and knee surgery for people with osteoarthritis.
The process was deftly handled by experienced JLA facilitators who drew very different folk together into an excited and enthusiastic team. The top 3 questions were pretty much unanimous:
- What are the most important patient and clinical outcomes and what is the best way to measure them?
- When is it best to have surgery for best outcome?
- How do we predict and reduce the incidence of constant post-operative pain?
Agreeing the remaining seven of the top 10 took some jostling, with patients putting their case forcefully to surgeons, physios having their say, and all, in the end, reaching consensus.
At the very end of the day, when we had our top 10 done and dusted and were about to pack away the paper mountain and go home, one of the surgeons made a comment about a question that had got away. It concerned the prevention of blood clots after surgery and he was worried to lose it. It was unexpected, unusual, and our brilliant facilitator steered a course through the ensuing discussion. The question snuck into the top 10.
And it was only then – for the first time in 18 months – that I thought about my dad, who died after a stroke following a hip replacement. Somehow, until that moment, work and home hadn’t met. I’d been the professional not the carer.
I said nothing, and similarly hesitate to write about it here, for fear of worrying some who await surgery. But I guess they will have thought about the risks. The fact we don’t know how best to minimise this particular one is important, and the work of this JLA Priority Setting Partnership should now mean it gets researched. This is certainly a bit of work I’d gladly take home.