I have written often on this blog about our James Lind Alliance (JLA) work, which uses a structured process to enable research priorities to be set by patients, carers and care professionals, rather than by pure researchers who may never see patients, or the drug industry. And I had been thinking it was time for an update, when the JLA summer newsletter pinged into my inbox.
The first story to catch my eye was by Leanne Metcalfe, a JLA advisor, reflecting on her experiences guiding the kidney transplant priority setting partnership (PSP), involving two very different patient groups: living donors who give a kidney, and patients who receive it. Her description of the unforeseen challenges and importance of the process is fascinating.
The newsletter also has a link to an article updating on progress from the Palliative and End of Life Care PSP. Although written in January, this piece reminds us of the call for research bids launched jointly by Marie Curie, the Chief Scientist Office of Scotland and the Motor Neurone Disease (MND) Association – which is currently deliberating those bids – offering a total of nearly £1.5million for research addressing any of the 83 research priorities identified by the PSP. As a former researcher into MND and someone whose mum was cared for so brilliantly in a Marie Curie hospice, this PSP has always been close to my heart. I wish all the applicants well.
The newsletter also reports that our own Sandra Regan has been appointed a JLA advisor. As many of you will know, Sandra has expertly run our JLA “hub” for the last two years, providing in house support for those wanting to do PSPs, enabling Oxford-based PSPs to be supported in all their “admin” functions, from arranging meetings to setting up websites and much more besides. How she manages to do this part-time (especially given the 10 PSPs completed or running since she joined us) never ceases to amaze me, but it’s great news for non-Oxford PSPs that she will now be available in her “free” time to be their independent chair and facilitator. We are keen to keep a clear line between her hub role here and her advisor work, so it’s likely that the latter will be predominantly for non-Oxford based PSPs, tho of course the experience she will bring to each role from the other will be invaluable.
We are also really pleased that Jude Rogers is settling so well as our JLA Assistant Project Co-ordinator, as the calls on the hub – and on Sandra’s time on more general PPI issues – grow by the day.
Two other Oxford updates in the newsletter are: a report on the funding given by the NIHR Research for Patient Benefit Programme to priority four from the spinal cord PSP – a study into the effectiveness of a new pro-biotic vaccine to help alleviate the urinary tract infections that so trouble those with spinal cord damage. And an article by Louise Locock, our BRC Patient Experience Research Fellow, reflecting on using data gathered by the rigorous patient experience surveys of Healthtalk.org as a source of potential research questions for PSPs.
Reflecting on matters JLA reminds me just how important it is that we use and develop the process to address the frequent mismatch between the research that takes place, and that which patients say matters most to them. There is lots of healthy debate about what this mismatch tells us about what is the best research, but just knowing we are systematically and rigorously finding out what matters to those at the sharp end of a whole host of medical conditions – and then promoting this research – is a good start.