Integrating lived experience expertise in research can bring insights otherwise missed by researchers and increase the relevancy of outputs to real-world contexts. This is why we established the Lived Experience Panel (LEP) for the CommonHealth Assets (CHA) project, with the aim to create an engagement approach that is empowering and mutually beneficial for participants (see earlier blogs).

In order to ensure inclusive, consistent, and effective engagement, we are using the National Standards for Community Engagement to measure the transparency, accountability and success of our engagement methods. We did so at baseline (July 2022) to evaluate the recruitment of the panel and our first meetings. Now at the halfway point of the project, following three Panel meetings, we return to the National Standards to assess how we are doing.

1.     Inclusion

CHA is a UK-wide project, partnering with community-led organisations (CLOs) across rural and urban areas within Scotland (Glasgow, Lanarkshire), Northern Ireland (Belfast, Derry, Fermanagh) and England (Bournemouth, Dorset, East London). Since our first meeting, the Panel has maintained a relatively diverse composition in terms of gender, race and age.

However, following initial recruitment, three participants have been lost, resulting in only one current representative from a rural area and a higher proportion of women now on the Panel.

This means that male perspectives and perspectives of those living in rural areas are limited, and recommendations made by the Panel may not have as much relevancy to those groups.

2.     Support

Initially meetings began online, however following discussion, the Panel decided the preference was in-person meetings. To reduce barriers to attending, we have supported those who had anxieties about travelling alone to bring someone with them, arranged for members at each site to travel together, covered overnight childcare costs, and worked with the Panel to ensure meetings are set at the most appropriate times for them.

3.     Planning and methods

Using panel member's feedback and suggestions, we have created a mutually beneficial engagement process through co-designing meeting agendas. For example, the Panel requested training on strengthening funding applications and income generation to address funding issues faced by their CLOs, which we are currently arranging.

We also work closely with the research team to identify areas where the Panel can input into research activities, ensuring that the methods used are appropriate, and that adequate resources and background information are provided for effective engagement. Feedback from our last meeting revealed that one member felt that the Panel could have had more opportunities for input into the research. As a result, we are now working to enhance opportunities for involvement as the research progresses.

4.     Working together

At the Panel's request, we hosted our first two in-person meetings at our partnered CLOs in Glasgow and London, and plan to hold the next ones in Belfast (October 2023) and Bournemouth (Spring 2024)

The Panel informed us that they wanted time to learn from each other’s involvement at their CLOs, so we allocated the first part of the meeting in London to do so. This gave members the opportunity to share advice and ideas with one another, and for us to learn more about the reality of the situations within each community.

Researchers have been present at each meeting to support engagement. The third Panel meeting was planned to coincide with a project management meeting in London, enabling the research team to join us. This direct interaction with the wider team has helped the Panel to feel more integrated into the project and has improved the credibility and relevancy of their feedback on project components.

5.     Communication

Although formal Panel meetings occur roughly every six months, we maintain communication throughout via online catch-ups and by sharing newsletters and publications via email.

At the Panel’s request, we have created a WhatsApp group for information sharing and keeping in touch. For those who need additional support, one-to-one telephone contact is maintained.

6.     Impact

The impact of the Panel on the wider research project is recorded using the PPI Impact Assessment Record form and the You Said We Did log, from NIHR Cambridge as detailed in our evaluation plan.

Due to time constraints, the Panel was unable to feed into the development of data collection methods. However, they did feed back on the delivery of the longitudinal outcomes questionnaires and into the development of Programme Theories. Some members of the Panel are also participants in the questionnaire and the photography activity, which will contribute to the overall findings of the research.

The researchers have agreed that the Panel’s input has been beneficial to understand how the Programme Theories relate to real life situations and to bring insights otherwise missed from stakeholder interviews.

The impact that taking part in the Panel has had on individual members has not yet been formally collected. However, some have reported positive outcomes such as feeling more connected to their community and increased confidence. A method of capturing examples of individual level impact is currently being developed.

Conclusion

Reviewing the progress of the Panel so far against the National Standards, we feel that we are providing an inclusive, engaging and mutually beneficial community engagement process.

Areas for improvement relate to the strength of the Panel’s involvement in different components of the research, and in representation from study sites in rural areas.

So far, the Panel has provided more of an advisory role rather than ‘co-designing’ the research, offering their expertise to aid in the understanding and interpretation of how the data translates into a real-world context, and how it can be reported in a useful way for communities. With the aim of improving the Panel’s involvement in ongoing research components, the CHA Project Management team will highlight, discuss, and assess their role, reporting on how improvements will be made as the research progresses based on the experiences and feedback of Panel members.

Related blogs

Common Health Assets: Evaluating the impact of community assets for health and wellbeing

Common Health Assets: The Lived Experience Panel

Common Health Assets: The Lived Experience Panel – initial reflections and tips for PPIE in research

Common Health Assets: The Lived Experience Panel - Creating the conditions for successful PPI engagement