Updating previous PSP priorities – The JLA’s learning so far

Introduction

The first JLA Priority Setting Partnership (PSP) was completed in 2007, with over 170 PSP Top 10s published since then.  As time passes, it seems appropriate to reflect on whether research has addressed the priorities set by a PSP and to check whether these priorities are still relevant to the community, or whether new challenges have emerged that warrant a fresh focus from researchers.

The first two PSPs to work with the JLA to update previous priorities were in Cystic Fibrosis and Emergency Medicine.   This report focuses on these two examples, although other refresh exercises have since begun.  The JLA has no single recommended approach to updating previous priorities and therefore worked with both groups to test the methodology for this.  These updates were carried out in the JLA Lab, the JLA’s exploratory space where new ideas and methods can be developed and tested, away from JLA PSP activity. 

Rationale for updating the priorities

It became clear that explaining to the community why a refresh was necessary would be vital.  Key considerations included:

• Progress on original priorities: Are the priorities from the original PSP being addressed through research, and has enough time passed to evaluate their impact?  How much time is reasonable – 5 years, 10 years, or more?    
• Current research landscape:  What are the latest developments in treatments and services, and how might these have affected the priorities of the community?
• Community involvement: Are patients, carers, healthcare professionals and researchers still engaged with the original priorities?  Would they see value in updating them? 
• Shifts in treatment or care: Have changes – such as the impact of COVID-19 on service delivery, altered the priorities of patients and healthcare professionals?
• Outdated interventions: Are any of the original priorities no longer relevant due to changes in medical practice? 
• Research capacity: Does the research community have the ability to address updated priorities?

Methods

The JLA Guidebook served as the starting point for both the Cystic Fibrosis and Emergency Medicine updates. While the JLA has no recommended methodological approach for refreshing priorities, any method would need to align with JLA principles, namely:

• Transparency of process
• Balanced inclusion of patient, carer and healthcare professional interests and perspectives
• Exclusion of non-healthcare professional researchers from voting (they may be involved in all other aspects of the process)
• Exclusion of groups or organisations that have significant competing interests, for example pharmaceutical companies
• A maintained audit trail from original submitted uncertainties to final prioritised list
• A recognition that making priority decisions does not create new knowledge but reviews existing evidence of uncertainty.

Both groups took as a starting point the seven steps in the JLA PSP process to set priorities:

1. Create a Steering Group
2. Gather evidence uncertainties
3. Summarise the responses gathered
4. Check the evidence
5. Shortlist the priorities
6. Conduct a priority setting workshop
7. Publish the Top 10.

They explored a range of methods against each stage to see if it was feasible or acceptable to reduce or exclude any steps in the usual PSP process.  However, both groups concluded that to ensure that patients, carers and healthcare professionals were consulted in a rigorous way and that the process would be fair and transparent, the full PSP method should be used.

In each case, key conversations needed to be had with Steering Group members about what the impact of the new prioritisation exercise might be on the original priority list.  Would the original list remain, with the separate addition of new unanswered questions, or would existing and new unanswered questions be ranked into a completely new list? 

Additional areas for consideration in a refresh exercise

In addition to the core PSP methods, other important considerations for any refresh exercise are:

Lessons learned from the original PSP

What went well in the original PSP and what could be improved?  For example, are there particular communities who should be heard from more this time?  How were the original priorities worded and how effective have they been in encouraging more research?

What is the status of the original priorities and how might they be included in the refresh exercise?

How many of the original priorities have been answered, and how might this be demonstrated to the community?  Should any of the original priorities be included in the refresh and if so, how?  If previous priorities could be brought up to date to reflect new concerns or treatments by the addition of a few words, will that be acceptable, or should the precise wording of the original priorities remain for the refresh exercise?  What will happen if some of the original priorities are no longer important to the community?

Who would be part of the Steering Group?

Can or should any original Steering Group members be included?  If so, who and why?

Scope of the refresh exercise

How well did the original scope work?  Does the original scope remain appropriate, or should it be revised based on changes in the research landscape or community needs?  How might Steering Group members interpret the scope and how might survey responses be managed in practice in response to the scope.

JLA Methods

Be aware that JLA methods may have evolved since the original PSP was conducted and those involved in the original PSP should be prepared to take on board the advice of the JLA Adviser who is chairing the refresh exercise.

Details of the Emergency Medicine and Cystic Fibrosis refresh exercises are on the JLA website but below is a table summarising the methods used.

Conclusions  

Updating a PSP allows for a new consultation with patients, carers and healthcare professionals, reflecting changes in research, treatments and services.  It highlights new unanswered questions and reaffirms the priorities that remain significant. 

Involving a JLA Adviser brings their independent oversight of the robustness and inclusivity of the exercise, as well their experience of methods and challenges to help ensure good use of the robust and long-established JLA process.

Our experience so far is that updating a PSP takes a similar amount of time and resource to running the original PSP.

It is vital to have conversations not only about the extent to which the original priorities are being addressed by research, but what the exercise to update the priorities means for the original priorities which the community worked so hard to identify.    

Key learning points for updating JLA PSP priorities

In addition to the considerations which apply to any typical PSP setting priorities for the first time, key learning points after the first two completed refresh exercises are:

• Be clear about why a PSP refresh needs to happen and explain that to the community.
• Consider what the message to the community might be about the original priorities and celebrate those that are being addressed by research. 
• Think about what the approach to previous priorities might be.  How might the new update exercise take account of them?  Discuss and agree this with the Steering Group.
• If you were involved in setting the original priorities, think about the previous PSP process and what you learned.  What went well, and what might you do differently this time? For example, are there particular communities that you would like to hear more from this time? You may want to spend time reflecting on the original priorities, how they were worded, and how successful have they been in encouraging more research in the area.  Or reflecting on the original scope and how well that worked.
• Who will be involved in the Steering Group of the update exercise?  Will anyone from the original Steering Group be involved? How will they feel about updating the priorities?  If previous priorities could be brought up to date to reflect new concerns or treatments by the addition of a few words, will that be acceptable, or should the original wording remain?  What happens if some of the original priorities are no longer a priority for people?
• Think about all the relationships involved in the original PSP, how relationships worked in practice, and who needs to be involved this time. 
• Spend time carefully thinking through the scope of the update exercise and discussing and agreeing this with the Steering Group.  Is it the same scope as previously?  Having early discussions, making sure that everyone has the same interpretation of the scope, and agreeing how it will work in practice can save time later in the process when the survey responses are being analysed. 
• There are no shortcuts to the process to update previous priorities.  The work is still intense and still takes a similar amount of time and resources.
• Be aware that JLA methods may have evolved in the years since the original PSP worked with the JLA, so be prepared to take on board the advice of the JLA Adviser who is chairing the refresh exercise.

We’re grateful for the hard work and enthusiasm of both the Cystic Fibrosis and Emergency Medicine teams who contributed to this learning.

Work has now been completed to refresh the original priorities in Type 1 Diabetes.  A refresh of the priorities in Palliative and End of Life Care and Stillbirth is underway.  Both of these PSPs published original priorities in 2015. 

As ever, please contact us with any feedback or questions about refreshing JLA PSP priorities.