Spaces for PPI Peer Support

In the School of Primary Care, Population Sciences and Medical Education (PPM) at the University of Southampton, as Patient and public involvement (PPI) Lead, I had an opportunity to gather public contributors together to meet, an opportunity to say thank you for all their involvement in our research projects and to celebrate their contributions by way of a Celebration Lunch Event.

As I reflect, I realise the power of the humble icebreaker. I’ve been to many training events in my life, the same icebreaker format of…."take a moment to introduce yourself, what you do, where you’re from and a quirky fact about yourself" which is all over and done with before you can blink!  What I had overlooked when planning this event was a key point… at the heart of public contributing is a story, an important story to tell. A story, often born out of a personal experience of facing difficulties, which becomes the very motivation for wanting to help researchers with their projects, be involved and make a difference; give something back. 

Abandon the clock, it doesn’t matter about the schedule, I tell myself. What matters is that the public contributors, who have gathered for the first time together, feel that their story has been heard and valued. I catch sight of a man who is listening intently to the story of a woman sharing about her personal interest in Diabetes and her involvement in these types of research projects. As she is sharing, the man’s face lights up. What she doesn’t realise is that he also has a shared personal interest in Diabetes, something that he’s been affected by too and I can see in  his face his keenness to speak with her, to ask about the research projects she is involved in, to learn more of her experiences and to share his. This is the power of sharing. 

Patient and Public Involvement can be very isolating, not the least for the person whose job it is to co-ordinate PPI and support researchers to support their public contributors. There is a need then, to provide spaces for peer support for public contributors, not just for sharing stories, experiences and tips but also for sharing important perspectives. One such perspective, was that public contributors shouldn’t need training, moulding into a shape that fits better with researchers. They are as they are, telling it ‘how it is in their own way’, no special way of speaking, no need for academic words, just as they are. That is after all what researchers are wanting, isn’t it? An honest perspective from the general public, from service users, not afraid to tell it how it is, giving their personal insights. A counter perspective, was that public contributors were keen for training, they want to learn and understand the research processes in order for their contribution to be more relevant and effective, in order to speak the same language as researchers. One thing is apparent, that training means different things to different people and creating spaces for peer support provides opportunities for difficult conversations, opposing viewpoints and the unpicking of knotty problems. 

So what can I glean from this experience? An hour isn’t enough time for public contributors to be able to truly share, listen to and explore each other’s different experiences and perspectives and that there is an appetite for a creative space to accommodate this, to provide peer support. Public contributor feedback of the lunch event was unanimous, they valued the “opportunity to learn about each other and to hear others opinions”, to “hear different views and to share information”, “to have great open discussions”, “discussions about experiences or involvement” and the “opportunity to network and discuss methods”. What would I do differently next time?  Provide more time and creative space. I salute the icebreaker, simple yet powerful!