Creating the conditions for meaningful and effective PPIE – Learning from the CHA LEP

Following the end of the CommonHealth Assets (CHA) project, we are pleased to share the evaluation report detailing the impact and outcomes of the CHA Lived Experience Panel (LEP) and a new academic paper which reflects on how to create the conditions for effective and meaningful PPIE in public health research.

The availability of reports and evidence on the outcomes, impact and design of Patient and Public Involvement and Engagement (PPIE) activities in research is currently limited, with the most extensive reporting currently covering clinical-based research, which has different practical implications than public health research done in community settings. This lack of reporting and examples of good practice, can make it difficult to know how to implement PPIE well and meaningfully in community settings. Therefore, we offer our reflections on the evaluation of the CHA LEP as a means to support others to develop more effective PPIE.

The evaluation of the CHA LEP

We evaluated the Panel throughout delivery to ensure that our methods of engagement were effective, sharing learning as we progressed through blogs and videos. By using feedback forms after each meeting, regular catch-ups, meeting notes and facilitator observations, we were able to learn and adapt our approach over time to suit the needs of LEP members, whilst meeting the requirements of the project. At the end of the Panel, as described in our new report, we also assessed the overall impact of the LEP on its members, and its impact on the CommonHealth Assets project, and project researchers, using data collected at baseline (July 2022), at the mid-way point of the project (October 2023), and following the final Panel meeting (October 2024).

The Scottish Community Development Centre’s (SCDC) National Standards for Community Engagement served as a guide to inform our LEP approach and its evaluation. Examples of good practice and benchmarks for success provided by SCDC were compared with the results of our evaluation to assess how well the CHA project had engaged and supported LEP members, and achieved each standard.

Full details of our evaluation strategy can be found in our previously published evaluation plan, and our baseline evaluation report can be found here.

Our successes

From our evaluation, it was clear that the methods of communication used, the support provided and the flexibility in our approach were key successes in the delivery of the LEP.  With varying communication and support needs amongst Panel members, we adopted a tailored approach to meet individual requirements. For example, calling and texting some Panel members instead of emailing them, and taking the time to read through materials with those who struggled to read documents alone. Having a dedicated LEP facilitator, allowed for that close, sustained individual support with LEP members to be fostered.

Mohasin never gave up on me. I lost my phone, went through personal issues but she persisted. Emails are hard for me but Mohasin text and called me. [LEP member]

The Panel also reported many benefits from being involved in the LEP, including making new connections across the UK, travelling to new places, trying new things like travelling by plane for the first time and attending a conference, and learning more about research and community development. Being involved in the CHA LEP also helped participants to grow in confidence, specifically in sharing ideas, talking to new people, and sharing in group settings.

These benefits were brought by creating a positive, friendly and open environment fostered through the inclusion of social activities such as dinners the evening before Panel meetings, and activities such as creating a Working Together Agreement for participants and the research team. Mutual respect and trust were harnessed by adopting accountability measures such as a ‘You Said, We Did’ log where researchers were required to log how LEP input was adopted within research activities and decisions. Adapting our approach over time as a result of the Panel’s feedback, also helped to instil feelings of trust and respect amongst the LEP and research team.

I feel that everyone’s opinions have been taken on board and relayed back to us all in clear formats for us to see. [LEP member]

Our limitations

Despite the CHA LEP being successful in creating a positive environment for participation, and in producing positive impacts for LEP members, the impact that the Panel had on the CHA project was limited. This was due to the lack of early integration of the Panel into the project due to a lack of funding and capacity to integrate PPIE in the project development stage. This meant that the Panel were not involved in key decisions related to the development of the research question and research methodologies, and therefore had more of an advisory role in the project than a co-design role.

This advisory role meant that the Panel mostly had contact with project researchers rather than more senior CHA team members, apart from the Principal Investigator who frequently attended Panel meetings. Some researchers fed back that more interaction with other senior team members would have strengthened the LEP’s impact in the project.

Although the diverse support needs of the LEP members were managed well by the LEP facilitator, a couple of project researchers shared that this was sometimes a challenge for them due to a lack of experience working with diverse public groups. More support and guidance could have been provided to project researchers who have little experience doing PPIE and working with diverse communities.

Wide range of literacy and comprehension was challenging to prepare for and engage with at times, when moving from one Panel member to the next. Better training in this would be helpful to anyone only used to interacting with groups who have a narrow homogenous abilities spectrum. [CHA project researcher]

Key learning

From the evaluation of the CHA LEP it is evident that creating a supportive environment where PPIE contributors are encouraged to participate effectively, in the way that suits them, is crucial to creating a mutually beneficial experience. For PPIE to have a meaningful impact on research, patient/public contributors must be integrated into various aspects of the research, including the early stages where decisions about the direction and methods of the research are being made, and the PPIE group need to have sustained, regular engagement with members of the research team in various positions of power throughout.

A full description of the successes and limitations of our approach can be found in our LEP evaluation report. This report, and accompanying academic journal article, provides a replicable model for inclusive PPIE, demonstrating how community expertise can be meaningfully integrated to shape complex public health research projects and research outcomes.

All of the resources we have produced can be found on the CommonHealth Assets page of the GCPH website.