Sandra Regan – James Lind Alliance Project Manager/ Hub Co-ordinator, Patient Involvement Working Group, NIHR Oxford Biomedical Research Centre
I feel privileged to be invited as guest blogger this week. I was wondering how and where to begin, and as I reflected I realised that I am heading into my ninth month as James Lind Alliance Project Manager for the Oxford Biomedical Research Centre JLA “hub”. So it seems an appropriate time to reflect back, review progress and let you know where the different Priority Setting Partnerships (PSPs) have got to.
The James Lind Alliance (JLA) brings patients, carers and clinicians in a particular health condition or area together to identify and prioritise the uncertainties, or ‘unanswered questions’, about the effects of treatments that they agree are most important.
The process is tried and tested, as PSPs have been running since 2004. First, the questions are gathered, usually through a nationwide survey; then, they are grouped together in themes and questions that are the same – or very similar – are combined. The aim at this interim stage is to reduce the number of questions to a list of between 50 and 100, which are voted on to produce 25/30 questions for discussion at a Final Workshop where a “top 10” are agreed. Part of the process involves checking the existing evidence base to see whether any of the questions have actually been answered, and can therefore be removed. It’s a bit like putting a lot of something into the top of a funnel, with less coming out at the bottom!
In the Oxford “hub” we now have several PSPs at various stages, with some ready and waiting for your involvement:
- 3 PSPs in Rare Diseases (bones and joints, blood, and genetic epilepsies) are preparing their applications to the JLA management team at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC). We hope that these will be up and running later this year.
- The Blood Transfusion PSP is gearing up for its first Steering Group meeting in May.
- The Early Osteoarthritis of Hip and Knee PSP is looking at the disease in the stages before joint replacement becomes necessary, which was addressed previously in the PSP on Hip and Knee Replacement for Osteoarthritis. The survey to gather questions is open until April 30th. If you are someone with experience of early osteoarthritis, or care for someone who has that experience, or are a health professional working with such people you can submit your questions here;
- The PSP on Surgery for Common Shoulder Problems is open for interim voting until April 10th. If this is something that affects you, or someone you care for, or you are a health professional working in this area, you can vote for the questions you think are most important here;
- Having held its survey late last year, the Kidney Transplant PSP is preparing the list of questions for interim voting. We expect to have this available before summer, with the Final Workshop in the autumn.
- The Bipolar PSP also ran its survey late last year, with over 3000 responses and, 14,000 questions. As you might imagine, this is keeping our Data Manager very busy as she groups questions for the Steering Group to review so that they can plan how to go forward. We expect that the interim voting will be held late summer, with a Final Workshop around the end of this year or early next year.
It’s been a busy nine months for the “hub” and it promises to continue, both with PSPs but also as we work alongside NETSCC to contribute in any way we can to their development and evaluation of the JLA method. I look forward to what the next nine months has in store!