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

13 Jan 2023 | Mohasin Ahmed

Although the recent move to virtual ways of working has brought convenience and efficiency to our lives, the significance of physical connections post-COVID and the ability to share a space has never felt so important. The value of this was clear during our first in-person CommonHealth Assets Lived Experience Panel (LEP) meeting in November 2022. Held in Glasgow, this meeting brought 11 Panel members from East London, Bournemouth, Northern Ireland and Glasgow together physically for the first time to input into the development of the programme theories – a key component of Common Health Assets realist approach. 

Our LEP meetings started online in July 2022, with feedback stating there was quickly a sense of “family” established amongst the group and that our virtual space felt comfortable to share views, thoughts and feelings “without feeling awkward”. As outlined in our original Patient and Public Involvement and Engagement (PPIE) approach submitted to the NIHR and as part of our commitment to creating a mutually beneficial experience for the LEP, Panel members were asked how they would like to meet for the next LEP session and hybrid/ in-person was collectively agreed. 

Planning for in-person 

We strived to make the meeting and visit to Glasgow a worthwhile experience for all by working to remove barriers to participation such as the reimbursement of all expenses incurred to attend the meeting (childcare, travel, accommodation etc.). 

To support those feeling anxious about travelling alone and to a new place, we planned for individuals at each study area to travel as a group. Members travelling from London and Belfast were accompanied by a project researcher, which provided additional support. 

Planning for success

Participants of CHA Lived Experience Panel sitting at a long dinner table, with drinks and cutlery beside each participant. Following a long planning process, it was a momentous occasion when everyone arrived safely in Glasgow. As this was the first in-person meeting it was important to take the time to build relationships, learn more about one another and to build trust and respect. A dinner was organised for Panel members prior to the meeting which helped ease nerves and demonstrated that we value the group as people and not just as participants. This informal gathering helped set the tone for the meeting the following day. Placing a strong value on relationships makes a significant difference to the effectiveness of PPIE approaches, and to the experience for those involved.   A speech bubble of a quote said by one of the CHA Lived Experience Panel members. The quote says:
"[I] enjoyed the social side with the dinner. Made the subsequent discussion much less anxiety provoking."

Creating a mutually beneficial experience 

PPIE is often described as conducting research ‘with’ participants, rather than doing it ‘to’ them. By including participants in the process and making sure their voices are heard, it creates involvement that is meaningful, mutually beneficial, and enjoyable.  

Panel members told us they would like to learn more about other community-led organisations (CLO) in the study, so we hosted the meeting at Annexe Communities, one of the partner organisations in the study.  

A speech bubble of a quote said by one of the CHA Lived Experience Panel members discussing a community led organisation (CLO) The Annexe. The quote says:
"The Annexe is a nice CLO for the community and I am happy to of been able to visit and have more of an insight of what they do for their community."

Julie Fox, the General Manager of the Annexe, spoke to the group about the organisation, its history, current projects and provided a tour of the building. It was useful for the group to be able to compare activities and have new ideas to take back to the organisations they are involved in. 

This type of exchange is also beneficial to the research team as it allows them to gain a better understanding of community-led organisations’ work, the struggles they face and the impact they have within their communities, helping to create more relevant research outputs informed by lived experience.  

Creating shared experiences 

Gestures like good hospitality go a long way when trying to reduce power imbalances and create a space that feels safe, inclusive and comfortable. Following lunch, our Glasgow Life colleagues provided a short tour of Kelvingrove Museum and Art Gallery which served as a thank you to the group for their contribution and again, allowed time to build relationships informally and see more of Glasgow. Members of the group stated this was “top of the day” and “a great surprise.”  

CommonHealth Assets

Failed planned transport resulted in an impromptu walk back to the Annexe, which was enjoyed as an opportunity to see more of the city. This demonstrates that even with a minimal budget, incorporating simple group activities into meetings is important as it aids the development of positive relationships and allows people to bond through sharing experiences of one another’s cities.    

The meeting ended with goodbye hugs, exchanged phone numbers and an excitement to meet again.  

Connecting with others on a human level and making them feel valued creates an open, empowering, and respectful PPIE experience. That strongly contrasts with practices of tokenism, which sometimes leaves research participants feeling disempowered and unheard.  

A speech bubble of a quote said by one of the CHA Lived Experience Panel members. The quote says:
"I really enjoyed meeting everyone face to face. It was really helpful to hear about projects in other areas. The workshops were well organised and very enjoyable.
We found the accommodation very good and the hospitality at the Annexe was amazing."

A special thanks to the team at Annexe Communities, our tour guides at Kelvingrove Museum and Art Gallery, the Common Health Assets research team and the GCPH Admin team who all supported the Panel during the trip.  

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