Across the programme, Patient and Public Involvement (PPI) representatives advised on public-facing documentation, contributed to ethical applications and acted as experts by experience on management and governance committees. To ensure that PPI panel member’s views and active contribution was consistently encouraged, each panel also had a research staff member with a designated PPI ‘buddy’ role. This role provided PPI members with a point of contact before and after project meetings to support the confidence of PPI members and also to ensure grounding in the meetings as they took place.
PERFECTED also involved PPI members in novel ways including as co-researchers in data collection activities which highlighted research practices and real costs implications for participants and projects that need to be met efficiently and appropriately.
During the research work completed on the wards some PPI members became co-researchers, contributing to data collection activities in ethnographic observations of acute hospital wards and co-interviewing carers of people living with dementia. To undertake this work PPI members were required to fulfil the same governance checks as academic researchers (obtain research passports, undergo health checks so forth). Some of these requirements were burdensome for PPI representatives and may have deterred some from fully engaging in the data collection. The research team fed these insights back to the funding body as a key learning outcome that may enable more inclusive and less burdensome approaches to PPI research engagement develop in future collaborations.
Drawing on the research experience of PERFECTED, we recommend an initial PPI meeting to agree PPI members’ commitments and expectations. For example, how often they wish to be contacted on project progress between scheduled meetings, what events could encourage communication between researchers and PPI members and opportunities for PPI members on committee groups to meet and discuss their roles within the programme (which we introduced this in 2014). Consistent and timely communication using a single point of contact, could be achieved with a PPI-specific administrative support role. The study team also recommends that meetings are face-to-face which were favoured by our PPI members. Pre-meetings with PPI members enabled clearer understandings of expectations and the views of PPI members’ views to be more fully expressed. Providing a single point of contact was important.
The extensive involvement of PPI members over the course of the project reflects the PERFECTED teams’ commitment to the NIHR guidance, and the specific guidance of PPI lead Prof Fiona Poland who was instrumental in CLAHRC EoE PPI innovations and development. We acknowledge all PPI contributors and give particular thanks for their patience, input, expertise and enthusiasm shown during their work on oversight committees, regional Service User Advisory Groups and as frontline co-researchers. We would like to extend special thanks to: Dave Gudgeon, Marion Shoard, Doug Lewins, Marianne Vincent, Angela Clayton-Turner, Sylvia Wallach Squire, Alan Caswell, Lynne Chambers, Fiona Hardy, Esther Harris, Dave Gudgeon, Ian Robertson, Marilyn Roberston, Liz Magem, Lorraine Reddington, Sue Tucker, Isla Dowds, Stevie Vanhegen, Denise Day, Sara Gregson and Dominic Tye for their contribution to PERFECTED.