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1. Background

Over the last 15 years there has been substantial investment in PPIE for health research which has prompted calls to measure the value, impact and costs of PPIE [1, 2]. Whilst measuring impact is important there are aspects of PPIE which are less easy to identify and measure. Understanding more about these aspects would enable better infrastructure, planning, and training for high quality PPIE. 

As a result of discussions between the PRIMER PPIE group at the Centre for Primary Care and researchers in September 2017, it was agreed these aspects of PPIE would be explored collaboratively, encompassing the perspectives of all stakeholders, and starting with an exploration of the difficult situations that can arise in PPIE work.

‘Difficult situations in PPIE are usually glossed over and ignored, so when they do arise there is no precedent or procedure in how to manage them.  From personal experiences we know the anxiety and distress this can cause. We hoped the workshop would start open, honest and practical discussions, acknowledging the challenges and sharing experiences on how to manage them. This is innovation in PPIE in a complex area."
Ailsa Donnelly (PRIMER member)

Meaningful PPIE relies on effective and close partnership between research staff and public contributors. These partnerships flourish when the environment supports both the work, (wherever it takes place), and the people carrying it out. However, there are times when partnership working becomes challenging and difficult situations arise, resulting in ethical and/or emotional impacts. All too often this aspect of PPIE isn’t acknowledged or discussed in an open forum, yet it is crucial to reflect on these challenges and experiences in order to learn from them. This work aimed to address this important gap.

2. Objective

To bring together researchers, patients and members of the public to discuss the types of difficult situations encountered when working in partnership and to identify the infrastructure and support required to address difficult situations, thereby creating an environment facilitating high quality PPIE.

3. Involving members of the public- an example of co-production

An organising team of 9 people was convened, comprising 4 researchers, 2 University staff working in a PPIE capacity and 3 public contributors. Our remit was to design and deliver a workshop that would meet our objective.

Public contributors from the PRIMER PPIE group at the Centre for Primary Care at the University of Manchester (UoM) prioritised this as a topic based on personal experiences and were prominently involved in all stages– this is an example of co-production from the very earliest stages. We created researcher-public contributor pairs when completing any tasks to ensure our public contributors were appropriately supported but also to ensure all perspectives informed the work.

4. The workshop

Firstly, we carried out a scoping exercise at the UoM, consulting PPI group coordinators and public contributors to identify examples of difficult situations. It became clear that difficult situations arise often but can vary significantly in the following ways: 

  • Core features
  • The cause
  • Who is impacted  
  • How they are impacted
  • Action required to bring about resolution

Six scenarios were co-written based on the findings of the consultation, covering   the following topics: communication breakdown, social media issues, harassment, managing power dynamics, becoming unwell and lastly, managing difficult and emotive situations.  As far as possible these situations were balanced in terms of gender, ethnicity, age and contributing roles in the scenario.

Workshop attendees used these scenarios as prompts to consider the best way of preventing issues from arising and how appropriate support can be provided if and when similar difficult situations come about.  Researchers and public contributors co-facilitated and co-presented.

The event complied with the Patients Included Charter, which promotes the inclusion of patient experience and insight in events. Appendix 1 outlines how we set out to achieve Patients Included status.

5. Evaluation

The workshop was held on 7th February 2018.  Thirty-five people attended, with a near even split of researchers and other University staff (n= 18) and public contributors (n= 17).

Our evaluation consisted of a survey of attendees and a reflective self-assessment of our co-production approach.

(i) Survey results

We based our survey questions around the Generic Learning Outcomes (GLO) framework.

Quote from attendees:

‘It was great to hear the various views and issues, and so good that everyone took such a positive view to contributing to discussions.  Congratulations to the whole team for this….’

 After promoting the workshop at a public involvement in commissioning meeting – ‘There was plenty of interest from the various funders, charities etc - all of whom could see the benefit of similar sessions for their communities’. Martin Lodemore (Senior Public Involvement Advisor at INVOLVE)

Key findings  

Of those who responded

  • 93% said the event met expectations
  • 94% rated the first three sessions as ‘good’ or ‘very good’
  • 81% rated the final two sessions as ‘good’ or ‘very good’; 19% as not applicable
  • 100% said the event increased knowledge or understanding of PPIE, for example the types of difficult situations that can arise when working in partnership
  • 60% said they had learned new skills or enhanced existing skills as a result of attending; 40% said ‘maybe’.
  • 100% said the event provided a useful format for bringing together members of the public and researchers to discuss the issue of managing difficult situations 
  • 100% said they enjoyed the workshop
  • 100% said they would attend another workshop on this topic in the future

 6. Impact of the workshop

In the 6 months since the workshop its impact is already being demonstrated. At the UoM the work is strengthening capacity for meaningful PPIE, an essential element of all health research.  Appendix 3 outlines the key impacts to date.

Our next step is to widen the impact, supporting colleagues to run their own difficult situations event, through the creation of a resources pack, containing the following:

  • Co-production top tips (covering how to set up an organising team and how to facilitate the workshop)
  • The Patients Included Charter
  • Workshop plan
  • Presentation slides
  • Workshop agenda
  • Workshop ground rules
  • Discussion questions
  • Facilitation notes
  • Scenarios/ exercises
  • Feedback survey
  • Agenda for the organising team reflection meeting

The pack is available, free of charge, under a Creative Commons licence i.e. it can be used and adapted providing the authors are acknowledged. We are now working with INVOLVE to disseminate the pack throughout the NIHR for the benefit of the entire PPIE community.  

Appendices

References:

1. Stanisewszka S et al (2011) Developing the evidence base of PPI in health and social care research: the case for measuring impact, I J of Consumer Studies, 35, 6: 628-632

2. Brett J et al (2014) A systematic review of the impact of PPI on Service Users, researchers, and Communities,  The Patient, Patient-Centred Outcomes Research, 7, 4: 387-395

Acknowledgements

Thanks to the co-production organising team- Dr Claire Planner, Carole Bennett, Suzy Bourke, Ailsa Donnelly, Sam Franklin, Dr Sally Giles, Dr Rebecca Morris, Dr Caroline Sanders and Dr Hawys Williams.

We thank the NIHR SPCR which funds the Dr Claire Planner’s Launching Fellowship. We also thank the National Institute for Health Research (NIHR) Patient Safety Translational Research Centre (PSTRC) at the Centre for Primary Care and the Social Responsibility Public Engagement Forum for providing funds to support the event.