Table 2 The innovative PPIE approach mapped onto UK standards for public involvement and engagement with consideration of areas for improvement
UK standard | Summary of standard | Activity—how the standard was met | Areas for improvement |
|---|---|---|---|
Inclusive opportunities | Offering public involvement opportunities that are accessible and reach people and groups according to research needs | Comic-based illustrations to describe complex and emotive symptoms in those who may find verbal communication difficult due to feelings of illegitimacy, breathlessness, cognitive issues, feelings of marginalisation | Due to COVID-19 the workshops were delivered online and therefore only accessible to those with access to a computer and IT skills. However, the workshops could be delivered face-to-face. Future work needs to include a more diverse population in terms of class and ethnicity (all group members were white) |
Working together | Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships | Recognising the role of the participants in shaping the research programme and developing the logo demonstrates value | Consider how the researcher being active participants impacted the outcomes |
The researchers were active participants in the workshops. Sharing the experience helps to foster trust and build relationships | Make the purpose of the workshops very clear (e.g., give an example of how this type of activity has shaped other research programmes) | ||
Support and learning | Offer and promote support and learning opportunities that build confidence and skills for public involvement in research | PPI through a shared experience which is enjoyable is less intimidating and provides an example of a PPI activity | Ask participants to evaluate the workshops formally and take this feedback forward to other PPI activities |
Sharing illustrations and experiences helps build confidence and relationships | |||
Communication | Use plain language for well-timed and relevant communications as part of involvement plans and activities | Use of non-verbal communication, namely comics, promotes imagination and storytelling, facilitating ‘meaning-making’ | People may have been less open on an online platform —create a space for people to disclose information privately and on reflection |
To develop a communication plan with the PPI contributors to consider modes of communication and content | |||
Impact | Seek improvement by identifying and sharing the difference that public involvement makes to research | Communicating the impact of their contributions to the workshop participants and the wider Breathe Easy group members. Writing this up as a academic paper. Presenting drawings as medical graphics and at an art event | Gather participants reflections on the impact the PPI activity has had |
Informs project focus (reframing balance) to loss of control regaining steadiness. The logo offers a tangible demonstration of their input | |||
Governance | Involve the public in research management, regulation, leadership and decision making | Setting ground rules to respect everyone’s voice and to keep shared experiences confidential | Increase involvement in the planning stage for PPI involvement and the types of activities |
Respecting confidentiality when embedding descriptions into written publications and reports |