Exploring the impact of the Lived Experience Panel: Insights from project researchers

Following on from previous blogs on the implementation and progress of the CommonHealth Assets (CHA) Lived Experience Panel (LEP), in this blog two CHA project researchers − Emma (University of East London) and Rejoice (University of Bournemouth), share their experiences of working with the LEP, the value of including community expertise and voice within the project, and the impact that this has had on their roles as researchers.

Early expectations of Patient and Public Involvement (PPI) in research projects

For Emma, the CHA LEP was her first time working on a research project with an embedded PPI component. Having previously studied the importance of PPI during her Community Psychology Master’s degree, she valued the concept but was unsure about its practical implementation, and if it would be simply a tick-box exercise to say that the public had been engaged. However, Emma says she has been pleasantly surprised at the way in which the CHA LEP has been delivered and integrated into a large UK project, and she feels there has been genuine involvement of the Panel members in the project.

"Mohasin and Jen have done a brilliant job supporting Panel members to express themselves and shape the research authentically." (Emma)

Rejoice, on the other hand, had some prior experience with PPI but noted that it wasn't as structured or engaging as the CHA LEP. “My previous experience with PPI included people being consulted on specific aspects of research almost a tick-box way, which meant there was not sufficient time to build and maintain relationships with people who had lived experience. It was all rather hierarchical with lived experience expertise at the bottom rung of the ladder.”  Rejoice also reflected that the “CHA LEP has built a community that is actively informed and engaged in the research process.”

The importance of relationships

Fostering strong relationships with Panel members was something that both Emma and Rejoice highlighted as an important step which has enhanced the experience of the involvement in the research for both the project researchers and Panel members. 

For Rejoice, there were some challenges initially recruiting LEP members from Bournemouth, due to scepticism about the research intentions. It wasn’t until she had spent time at the community organisations, and got to know the participants there, that trust was established.

"It was harder to recruit for the PPI at the beginning, but once relationships were built, it became easier to get people on board." (Rejoice)

Through engaging with the LEP, Rejoice reflected on the importance of understanding participants' concerns about their involvement. She learned that ensuring participants feel their voices and views are genuinely heard and considered in the research was crucial. "People are concerned about giving their time and effort, so sensitivity is needed to get to know the intended participants first and to reassure them that their time is not being wasted", she explained.

Emma also spoke of building relationships with members of the LEP, and how their enthusiasm about the project has inspired her in her role. The close relationships that have been fostered between the Panel members and researcher team has amazed her − “It was much more personal than I imagined, in such a brilliant way!”

The strength of these relationships has helped to build confidence among Panel members and helped to create a community where people can learn from and support one another.

“A community has been built up within the research project where members have been able to share experiences, learn and develop brilliant skills.” (Emma)

The LEP's impact on research

In terms of the impact that the Panel has had on the CHA project, both Emma and Rejoice believe there have been many clear and tangible benefits so far.

Both said that the enthusiasm that the LEP members have had for the project has helped them to recruit and retain participants for project components like the longitudinal surveys, by spreading the word and encouraging people to get involved. Rejoice said that Panel members from Bournemouth have become her “research champions”.

Emma also shared that the LEP has helped to ensure that the approach taken and the language used in surveys and interviews are accessible for participants, and that the direction of data analysis and outputs of the project are on the right track. "The London Panel members have been integral to my experience as a researcher", Emma says, emphasising how their involvement has enriched her role greatly.

Rejoice was specifically interested in how the Panels could relate to and grasp complex research concepts, and how they assisted in highlighting overlooked aspects, such as the everyday relevance of certain concepts − "The Panel helped us return to simple English, yet with rich theoretical and practical grounding."

Emma also spoke about the value of being able to visit the different research sites and partnered community-led organisations across the UK, through attending Panel meetings. These provided a broader perspective on the CHA project for her as a researcher, enabling her “to really see the project and work of community-led organisations in action”.

The Panel’s positive experiences within the CHA project have also provided motivation for them to get involved in future research, which is a testament to how building relationships and involving people in research being undertaken about them and their communities helps to build trust and interest in research. This could play a vital role in engaging more seldom heard communities in research.

The essential role of PPI in research

Both researchers agree that PPI has an important and valuable role in research − centring community voice, perspectives and expertise at the heart of research projects rather than institutions and professionals making decisions  that exclude local participant and involvement.

"PPI should be a crucial component from the beginning of research projects." (Emma)

Emma advocates for better overall community engagement in research, recommending allowing participants to share their experiences in a way in which they feel comfortable – whether these are traditional research methods such as interviews and surveys or more creative methodologies such as art, photography and performance.

Rejoice echoes Emma's sentiments, emphasising the importance of engaging those with relevant lived experiences in a fun, rewarding and supportive way.

"[PPI] brings theory and practice together in a way that makes research relevant to society.” (Rejoice)

The experiences of Emma and Rejoice with the LEP underline the transformative potential of genuine PPI in research. By fostering authentic relationships, building trust and ensuring community voices are integral to the research process, a better experience for researchers and research participants and making the research outcomes more relevant and impactful for people and communities can be achieved.