I’ve written several times on this blog about the James Lind Alliance. Now a decade old, and becoming ever more popular in the research and funding communities, the JLA method gives decision-making power about what research matters in a particular condition to patients/carers, and the health professionals who look after them.
Our JLA work featured at the recent BRC open day.
To date, we have supported JLA priority setting partnerships (PSPs) in hip and knee replacement for people with osteoarthritis and in treatment of spinal cord injury. We are just launching new partnerships on common shoulder problems, treatment of early stage hip and knee osteoarthritis, kidney transplant and bipolar disorder as well as partnering a PSP for depression.
As part of the growing JLA “hub” in Oxford, we are now hosting the details of new PSPs on the Oxford University Hospitals website.
We are really pleased to be doing this as it will help to bring our JLA work to a larger audience. The first survey to give live on that site is for the new PSP in common shoulder problems.
I was amazed to learn that four in every 100 of us visit our GP every year with shoulder pain, with half of all these still in pain or with restricted movement six months later. While more and more patients are now referred to hospital specialists for surgery, there is still much that is unknown, from which patients are best treated with surgery to when to operate, or indeed whether physiotherapy is a better option. These issues mirror many of those that came through the first Oxford PSP, in hip and knee replacement for people with osteoarthritis.
Back in 2008, Iain Chalmers, a founding father of the JLA wrote in the British Medical Journal: “Our failure to confront uncertainty about the effects of treatment has resulted in the suffering and death of patients, sometimes on a massive scale.” This chilling statement is a rallying call for the JLA, because all PSPs have their roots in admitting uncertainty. It’s hard for all of us to say “I don’t know” – and arguably no more so than for health professionals wanting to quell the fears of the patient in front of them.
In a world where evidence is king, uncertainty is hard to handle, but the JLA approach seems to be granting the professional community the chance to heave a collective sigh of relief and admit that they don’t know it all, and are keen to work with patients to address the knowledge gaps. Tackling uncertainty well is one of the best ways we’ve got to make life better for patients.