Busy this week getting ready for the INVOLVE conference – and the frustration of having to choose between parallel sessions when all of it looks so good. Not least, the presentations I have to miss while doing my own!
INVOLVE, like us in Oxford, is funded by the National Institute for Health Research (NIHR) and supports public involvement in NHS, public health and social care research. It is one of few government-funded programmes of its kind in the world, and every other year arranges a conference where those in research, in patient and public involvement (PPI), patients and carers gather to share and learn.
It must be close to a decade since I spoke at their conference about the James Lind Alliance (JLA), when it was a new arms length venture of the Department of Health and the Medical Research Council and being run by, well, the phrase “a bunch of enthusiastic amateurs” springs to mind. But I hardly dare call them that because: (a) I was, peripherally, one of them (b) all had amazing skills to bring to the job, and several are still closely involved with the success story that is the JLA and (c) they have become firm friends. But the truth is that, way back then, we were all amateurs in the unique idea that was the JLA, and finding our way as we went.
Fast forward ten years, and I’ll be back at INVOLVE on Thursday talking about the JLA again. Together with Alison Cranage from MQ: Transforming Mental Health (funders of the depression JLA priority setting partnership (PSP) and part-funders of that in bipolar) and Katherine Cowan, Senior JLA Adviser, we will be running a workshop called “James Lind Alliance Priority Setting Partnerships: Involving patients to change research.”
My slot will look at how the JLA is helping us to deliver our PPI strategy and present two projects that we commissioned to evaluate in part the issue highlighted in the title: just how do patients change research?
The first of these compared three different ways by which the JLA can gather research questions from patients and carers: surveys (the traditional JLA approach), discussion groups and extracting data from interviews on the patient experience website Healthtalkonline. This was the first time that a PSP had used all three methods and the study aimed to assess which was the most impactful and cost-effective. The headline result is that survey data was the most comprehensive, while Healthtalkonline data led to one unique uncertainty within the top 10 that did not come through the other data-collection routes.
The second project had dual aims: to test a new kid on the block – PiiAF – the Public Involvement Impact Assessment Framework – to see how it shaped up as a PPI impact assessment tool, and to use it in a JLA PSP to identify where those involved felt the impact of PPI could most usefully be explored.
Their top priority was an in-depth look at the impact of different types of survey participant (patient/carer/clinician and subgroups of these) on suggested treatment priorities. This is an important question and pursuing it may shed light on how much weight is given to different contributors and their ideas as they pass through the JLA process. This matters because we often lump “patient and carer” together and assume they want the same things, but there is evidence that this is not always so. Research of this sort may also be interesting in revealing the extent to which patients at different stages of illness want different things.
With both the above projects we are working with the NIHR management home of the JLA to see how best to take them forward, and ensure that those running PSPs know about them if they can make their approach better.
It’ll be nice to be back at INVOLVE, and to know that a bunch of amateurs came good.