Parkinson’s UK is an excellent organisation. It is arguably an exemplar for other charities looking to involve patients and the public in medical research.
This week, together with the indefatigable James Lind Alliance, it set about the task of asking people affected by Parkinson’s – those with the disease, carers, family members, health and social care professionals etc., – to identify the top ten unanswered questions they want Parkinson’s research to look at in the future.
You can go straight to the survey here. But I would actually recommend you also look at the very helpful background information they have put on their website about the project. This includes information about who else is involved, how they will arrive at a top ten, and the way in which the results will be used.
As well as the online survey I think I am right in saying they have also mailed out tens of thousands of surveys to members and others. Parkinson’s UK didn’t get here overnight when it comes to involving people. As is common with organisations who get this right…they got it right from the start.
When they rebranded themselves as an organisation a few years ago and developed a research strategy to match, they established a core principle of involving people. They established a network of patients and carers in research. Looking back through my own emails they first told me about their plans for a James Lind Alliance Priority Setting Partnership (JLA PSP) at the beginning of this year. They have put in the hard work. The team there – including patients and carers – are to be congratulated.
If you are interested in knowing what these unanswered research questions look like when they come out the other end, here’s a link to the outcome of a similar exercise completed by JLA and the Alzheimer’s Society in the summer.
Funnily enough, I have had three enquiries just in the last ten days about priority setting partnerships which are now hosted by NIHR’s NETSCC organisation.
If you are interested in taking part in Parkinson’s research in others ways, such as participating in a trial, then the charity also has a good web page dedicated to how you can find this information.
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