Case study: managing difficult situations in patient and public involvement

How can we manage difficult situations in patient and public involvement? Nuffield Department of Primary Care Health Sciences and NIHR Applied Research Collaboration Oxford and Thames Valley have held a workshop, finding that training, systems and processes and culture and expectations are key.

What’s the issue?

Most people who have anything to do with patient and public involvement (PPI), be it as a public contributor, researcher or member of staff, do it because they believe in the value it brings to research. However, there are numerous challenges (payment difficulties, lack of support, no continuity) that can make people want to walk away. Sadly there are also some people involved who have inappropriate motivations or behave unacceptably, and this can make for difficult situations which we often feel ill-equipped to deal with. There had been several occasions when one or more of us had experienced upset or at the very least discomfort. PPI has evolved quickly and needs systems, resources and support to guide solutions when things go wrong, and we aimed to take a first step towards addressing this.

What did you do?

We convened a group of relevant stakeholders (PPI leads, researchers and public contributors) and developed an in-person, interactive workshop. We worked with the PPI team in Manchester who had done some similar work a few years previously to ensure we did not duplicate what they had done. 

The workshop began with case studies, then provided an opportunity for the three stakeholder groups to discuss ‘difficult situations’ separately (providing a safe space) and begin to consider solutions. Everyone then came back together to share, discuss and make recommendations, which delegates then prioritised using ‘dot democracy’. 

A research illustrator joined the workshop to add some lightness to what could otherwise have been a very challenging day. She created a piece of artwork to illustrate the discussions, and which everyone was able to contribute to.

What happened?

We came up with a list of priorities and recommendations, and from that a logic model was developed to guide next steps. A key theme that came up time and again, was that all stakeholders felt they needed training – various topics were mentioned, including communication skills, handling conflict, working with under-represented groups and understanding the research landscape.

Among the benefits was a general feeling that this work, however uncomfortable, is much needed and people felt it was important to have started these conversations. It was good to have been able to speak in separate groups but then come together to work on solutions. Another important benefit was how valuable it was to hear each others’ perspectives – for example, many public contributors were surprised to hear that PPI leads mostly don’t get any training for the job. And some researchers had not appreciated how much public contributors value constructive feedback to enable them to develop and fulfil their role.

What could other people take from this?

Three overarching themes emerged from the day which are key to managing difficult situations: 

• Training – for everyone involved, ideally with recognition and accreditation
• Systems and processes – for example, agreeing roles and responsibilities; a clear, known process of what to do when something goes wrong.
• Culture and expectations – for example, ensuring everyone has appropriate motivation; providing feedback.

It was really important that we had equal, or as close as possible, numbers of people from each stakeholder group. We aimed to have slightly more public contributors as it was suggested that researchers and PPI leads could be seen together as ‘staff’, and this balance worked well.

Holding the workshop in-person was a huge benefit. For many people it was the first in-person event they had been to since the pandemic, so there was a lot of enthusiasm and the social interaction was appreciated. This also meant that people were very willing to contribute and get fully involved in discussions.

We ensured any additional requirements were provided for including on-site parking, space for prayers and, in particular, asking everyone to use the microphone when they spoke in the group setting.

We needed much more time to plan the workshop – it was done in barely a month. This meant that we had not had time to fully outline how facilitation would work and, ironically, what to do if any difficult situations arose, which unfortunately did happen, leading to considerable upset for a couple of the group. Another time we would have guides for group work and a ‘spare’ person to be on hand to help out with facilitation if needed. 

Most of the admin and organising was done by one person in the group, and this meant that not everyone was fully up-to-speed with how things would work logistically on the day. We had also not had time to visit the venue prior to the event, and it would have been helpful to know where the break-out rooms were, and if possible arranged to have them closer together. 

Are there any resources/outputs?

The research illustrator Carmen Byrne produced a beautiful piece of artwork,along with the final report.

What’s next?

We agreed to focus on the development of accreditation and accompanying training for PPI leads. Polly Kerr, Paula Wray and Alexandra Almeida are leading this work, collaborating with Angeli Vaid from Oxford Biomedical Research Centre, Stan Papoulias from Applied Research Collaboration South London, and Claire Planner, Becci Morris and Sally Giles from the Manchester team who previously did work on this.

We are in touch with Jo Welsman from Exeter who is doing related research, and hope to incorporate her findings into our work.

We did a nationwide survey of PPI leads to ask about the experience and skills that they brought to their PPI role, and what training would support them in their role. We have analysed this data and are now developing a core competencies framework outlining the skills required at beginner, intermediate and advanced levels. We are working on a training programme to cover the main things that came up in the survey responses. 

We hope to pilot three training sessions in Oxford, London and Manchester, which we will evaluate and write up. This will form part of a report along with the competencies framework and our recommendations for additional support and guidance (such as tackling system issues which were raised in the survey responses).