In this blog, KIS Steering Group member, peer supporter and community organiser Chris Pavlakis shares his experience of building community through involvement in research and co-producing an event..
Community is central to our life and wellbeing. Lucky are those of us who grew up surrounded by family, friends and members of our community. Growing up, I always had ‘my people’, which cemented the feelings and benefits of having a network around.
But moving to England almost a decade ago for family and work exposed me to the many challenges of making friends and creating community, especially in spaces lacking in diverse representation, such as research.
Financial woes and a difficult physical and mental health journey hindered further my ability to effortlessly meet new people. There are significant comforts and unsaid ways of being that come with being in spaces with others that I had to let go of in my day-to-day life. Without such spaces, I often did not feel like myself, and I continue to yearn for communities where I could just ‘be’ and discuss shared concerns and aspirations with others.
This drew me to ponder the many ways in which members of marginalised groups create and maintain community, in-person and online. It is important to highlight the need for spaces and communities that are centered around marginalised groups, and especially to dispel the notion that the creation of these spaces is exclusionary for members of the dominant culture(s).
And then, in 2022, I decided to express an interest in joining King’s Improvement Science (KIS)’s Patient and Public Involvement (PPI) steering group. The group brings lay members with lived experience of accessing health and care services for themselves or loved ones together to discuss current issues around the public engagement landscape, and in so doing, generate better health outcomes.
Back in October 2024, KIS held a conference at Coin Street Neighbourhood Centre, titled ‘The value of partnering with the public to improve healthcare services’. The event was co-designed, organised and carried out with patient and public involvement members. When I was initially invited to join the planning group, I could not have believed that the journey would be so rich in experiences. The planning meetings I attended exposed me not only to different life experiences, but also to different lines of thinking around public involvement. But we found common ground to work together and discovered common hindrances that hold us back from speaking up and taking action.
‘Safe Space’, was a term used often at our meetings, especially when they were delivered online. It is a call to action to ensure that everyone in that space feels safe, is not exposed to harm, and at a minimum, is protected if safety is not met. My experience of being in the planning group was that we created a culture where everyone’s views and knowledge was valued, paid attention to and contributed to a collective body of knowledge that could be delved into for the benefit of meeting our objectives.
For instance, when different views came to the surface regarding the language we should use in the event title, and what it would mean to find a truly accessible venue, discussions remained rich and insightful.
"All views were heard and respected and decisions were taken on a consensus which left all members of the group ‘owning’ the final choice. This led to a highly productive, humane and positive experience for all, in my view. This sentiment was reinforced by the collective responsibility undertaken and care shown by everyone in the group, whether KIS staff or fellow lay members."
Plus points are to be given for the efforts to be flexible around arranging meetings (either online or in person, according to our needs) at convenient times, and parity in decision making.
On the day of the event itself, I was nervous to be on stage and felt somewhat vulnerable speaking about my lived experience, however, I was well supported and empowered by each one in the planning group and the entire KIS PPI crew. The high turnout and the great engagement level from attendees has energised me beyond the event and confirms to me the importance of this type of work, our collective choices, and my participation in discussions.
Video link: The Value of Partnering with the Public to Improve Health Services on Vimeo
At this point of the iterative journey, I can see the positive impact of participating within myself: exposure to a highly stimulating group has given me greater self-confidence to discuss, peer reflect and brainstorm. I believe in myself more, see a brighter future, and tend to express increasing interest in joining other initiatives in the field of mental health.
"I hope that more people with lived experiences will see the relevance of joining such spaces and making a difference, and ideally, find a community that lifts their spirits and broadens their horizons. In the words of the great poet and civil rights activist Audre Lorde: “Without community, there is no liberation”.
About Chris Pavlakis: Chris is a peer supporter and community organiser active in immigrant and neurodivergent spaces. He has been a regular public contributor utilising his lived experience in various health and care studies and working with NHS trusts, research organisations and charities. He is often consulted and asked to contribute to projects related to mental health, cancer and adult social care.
