James Lind Alliance PSPs are 50+ not out and I am glad they are batting for patients #prioritysettinginresearch @LindAlliance @OfficialNIHR @NIHRINVOLVE

James Lind Alliance Priority Setting Partnerships (JLA PSPs) are arguably one of the  most successful initiatives in public involvement in research in the UK over the last 10 years.

They are the ‘go to’ methodology for defining patient, carer and health professional priorities in research; particularly for charities and patient groups who see them as an opportunity to change the research agenda.

From the first ‘PSP’ in asthma in 2007 , the method has now been used to look at treatment uncertainties across a massive range of conditions.  59 had been completed by the end of last year.  Over 30 are on the way.

14 PSPs were completed last year compared to 7 in each of the previous five years. Rarely does a day go by without me having a conversation with someone thinking about doing one.

Now they are being used to identify priorities for other issues like adult social work.

The most recent PSPs have been in Type 2 Diabetesscoliosis, Frailty (Canada), Common conditions affecting the hand and wrist, Neurodevelopmental disorders (Canada again), 

They are one of the UK’s most successful exports in public involvement with the method being used in Canada (see above), Australia, and the Netherlands to name just a few countries.

Last year the JLA PSP community – all those who have been innovators behind the name – came together to celebrate being 50 not out and to think about the future. The excellent report of that discussion can be found here.  My personal headlines from reading the report would be as follows:

  • The method is robust and sound. Those who wish to tinker with it do so at their peril.
  • JLA Advisers – those who guide people through the process – are worth their weight in gold.
  • The work to bring more clarity and provide improved guidance on the JLA method will never stop.
  • There is a recognised need for guidance on how to turn PSPs into funded research – the voices and stories of those who have done will be increasingly important.
  • An international network of ‘PSP-ers’ can only be a matter of time.
  • Open access to the data collected through JLA PSPs is not a pipedream. Watch this space.
  • The community of interest that had built around JLA PSPs is passionate, committed and a force to be reckoned with. We are lucky to have them.
  • With 85% of research being avoidably wasted, JLAs could never be more important.

Read and enjoy.  And if you are thinking of doing a PSPs here’s the website.

 

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