Hearing from PSPs. What do people tell the JLA?

Date: 22 May 2019

JLA Guidebook

The JLA has been collecting feedback from completed PSPs for two years.  In that time, 49 individuals involved in organising PSPs have completed an online survey to tell us how they felt about the PSP process once they had published their Top 10.

They’ve been kind enough to give their responses to questions ranging from “why did you choose the James Lind Alliance” to “how satisfied were you with the final priority setting workshop”.

Feedback enables the JLA to learn about what’s been working well and what needs improvement for future PSPs.    It informs new guidance and we’re extremely grateful to all those who take the time to complete the surveys.

On the whole, it’s positive news.  For example, 98% of respondents would recommend the PSP process to others, adding comments like:

“Really insightful and helpful in setting priorities that are not those of the researchers”

Based on this and another PSP experience, it is a robust method that is flexible and goes to some lengths to capture the views of patients/families as well as clinicians.”

"There is value in the process beyond developing the Top 10.  It helps build community, raise awareness, strengthen relationships with partners.”

“I think it is a well-structured and fair method to decide research priorities.”

However, some people who would recommend the process also give useful observations that remind us of what it’s important for others to know if they are interested in running a PSP:

“Yes, but I would make it very clear how much time being the Lead takes up!”  

“Yes, but I would ensure that they appreciate that it isn’t necessarily a straightforward process.  It is time consuming and hard work!”

“We underestimated the time needed for analysis of the data.” 

 “We found it very difficult to reach those who are seldom heard.”

Thinking about the final priority setting workshop, almost all respondents (98%) were satisfied or very satisfied with the workshop and 94% agreed that all participants at the workshop were able to contribute and communicate their views.  Everyone who responded agreed or strongly agreed that the workshop achieved its aim of helping patients, carers and health professionals to work together to set priorities for future research.  

“Our final workshop was terrific.  Everyone participated, worked hard and enjoyed themselves.  It was a great experience.  There was a great sense of satisfaction on the part of everyone who participated”.  

Again, the extra comments also provide useful pointers for other PSPs that we’ll take account of in the Guidebook:   

“We realised we could have spent more time avoiding questions that had overlap or were different aspects of what was fundamentally the same question”

In the survey, PSPs tell us about a varied range of next steps for promoting their priorities and developing them into research questions, which all adds to the already wide range of examples that we can share amongst PSPs.

So, why do people choose the James Lind Alliance?

“We wanted to use a recognised approach to prioritising research questions from the point of view of those most affected.”

And a final word from one PSP organiser…

“Just to thank you for providing this PSP framework…We were supported by our adviser at every step and what was thought to be a daunting process turned out to be very enjoyable.”

Please continue to give us feedback, not just through these surveys but at any time by talking to your JLA Adviser or emailing us on jla@southampton.ac.uk so that the JLA can continue to develop and improve.

 

  • Summary:
    The JLA has been collecting feedback from completed PSPs for two years. In that time, 49 individuals involved in organising PSPs have completed an online survey to tell us how they felt about the PSP process once they had published their Top 10.
  • Year:
    2019