Our Public Involvement Co-ordinator, Kate Horton, reflects on taking a meaningful approach to wellbeing through conversations with public contributors.

As public involvement coordinator at the Institute, I have experienced wellbeing conversations quite a lot in the NHS. I have also worked in the private sector, in small and large businesses and even been self-employed and I am always interested in the practice that is ambiguously called “wellbeing”.

How much of wellbeing is instructed? How much is self-organised or “common sense”? Is wellbeing something we do ourselves, or do we hope our employers, colleagues, peers, and personal networks are part of that conversation? Professionally, my curiosity extends to how much of this is translated into how we ‘Do the PPI’ or how we involve public contributors in research.

Like many topics that are not directly part of a research study, I spend time mulling things over in the background. Alongside live projects, I have day to day conversations giving advice to researchers, pastoral support, signposting to other services, mediating relationships to help groups succeed…and more. Much of this frequently circles back to wellbeing practice, and it feels like now is the time to explore it more.

Kicking it off

Wellbeing became such a recurring theme, for both public contributors and their hosts, that it needed exploring. So, I advertised an opportunity to have these conversations and brought together a group of willing and knowledgeable public contributors to do just this. I coincided the kick-off conversations with when I had a budget to thank group members for their contributions. It’s rare that the right budget and right amount of time ever happen together so as the facilitator I must decide the priority:

a) kick starting a conversation with a budget – not knowing when I will have the space and time to follow it through, or

b) find time when I can follow the whole thing through but knowing I might not be able to reimburse involvement

Where budgets exist, option a) wins for me as it means I can talk to people interested in the topic and I can respectfully and genuinely offer a thank you for their involvement in line with NIHR guidance and good research practice.

So, here’s what happened earlier this year...

We had two great group conversations online. In the first session we explored what wellbeing meant to those in the room. In the second session we tried to identify how this could be, or should be, considered, looked after or “supported” (arrgggh…..the second most ambiguous word in all this). Although we did try to talk about it in the context of involvement groups, it was hard for us all not to draw on wider experiences; as volunteers, as part of the workforce, as parents and as carers, as managers and when we have been cared for.

It wasn’t surprising that when talking of experiences in involvement, these other facets came into the conversation. We do talk about “your whole self” more in working conversations. Why would public contributors be any different? Or expected to be? After all, it’s that “whole self” lived experience that has brought them to research involvement.

The basics

There were clear basic principles that were common for everyone:

• Honesty

• Purpose-focused

• Individuality

• Emergency contacts

• Trust in each other to do the right thing

And there were elements that felt more important to some than others, because of their experiences (did I mention bringing your whole self…..?) A very important point raised was the equality (or inequality) in involvement and how this translates in wellbeing, caring, uncaring and duty of care. Awareness of where this inequality is and saying it out loud in an attempt to address it or as one group member put it “meet people where they are”. For example, hearing more about a researcher’s own wellbeing arrangements levelled the relationship with public contributors. It took it away from clinical, power-structured conversations and made it more honest and again, for those at the back, whole self-y.

The “warmth of informality” was also highly regarded. This knowing me, knowing you (aha…sorry, had to get an Alan Partridge reference in there somewhere) created a proper relationship with trust, understanding and flexibility. There were also clear experiences where discussing wellbeing wasn’t a good idea. These were where relationships didn’t have that trust and where people didn’t feel comfortable sharing their whole self. This could be in fear of judgement, a lack of trust in where that information would go but also how that information could be used at a later stage.

The purpose of sharing any information was very important. Especially when it comes to emergency contacts, medical conditions etc. They might be safe in the hands of the current ‘host,’ but people change, leave jobs and then where does it go? Things that in work environments are covered by governance, HR, policies….in Involvement are looser. Which is 90% of the time a good, individuality-respecting, whole self-y thing, and highly valued by public contributors. However, these things can be more difficult for leads and coordinators to grapple with.

What next?

I have lots of valuable insights from the conversations and it is now on me to bring them together to help create some guidance. I want to create experienced-based, practical guidance to help researchers and public contributors consider ‘wellbeing’ within their activities. These guidance notes will be published on the Institute of Mental Health website and shareable once they have been seen by the original group members. Hopefully this will help strengthen and add depth to public contributor / researcher relationships and bring more value and importance to the involvement taking place at the Institute. One thing is becoming clear though, involvement is about adding value to research.

Patient and Public Involvement is the core activity to provide research with lived experiences. Therefore, how we interact in involvement, how we consider the wellbeing of each other must be at the centre of this. Particularly if you’re inviting people to be involved because of their experiences, we can’t then expect them to leave that at the door, in order to join us.

With thanks to Wendy Wheat, James Towler, and all public contributors, colleagues and researchers who have been involved in these conversations so far. With an especially large thank you to all the group members who took part in these conversations with me earlier in 2022. I want to say to you all how much I appreciate the time everyone was able to share with us and your experiences offered to start this conversation.