Last week, I had the pleasure of presenting our Reaching Out project at the Public Awareness of Research Infrastructures Conference. This conference described itself as a hands-on forum for communications, public relations and engagement professionals staff to share their experiences and expertise. I wasn’t sure what to expect: Would my work be relevant to communications professionals?; Would I learn anything?
In terms of the conversations I shared and the lessons I learnt, I think this was possibly the most valuable conference I’ve attended. A great chance to network outside of the PPI world. Plus people liked the talk and told me they learnt something!
I can’t go into all the talks and conversations, but as a little snapshot I’ve highlighted those that stood out to me.
Under-resourcing for communicating/engaging the public spans all science fields
The quote ‘we need to recognise that this is a bread and butter activity not a tag on activity’ fits well with what I know we all experience.
Payment recognition for public is not limited to health and social care
A presenter discussing citizen science mentioned that a public member pointed out ‘you’re all paid to be here, I’m not’.
Are we all too scared to take risks?
Many people commented on the openness of my talk and how impressed they were to see a slide on ‘what didn’t work’. Why are we always so keen to show off and hide the challenges? We discussed how it is likely to be because we are typically publically-funded organisations and, as such, feel that we have to always be proving that we are spending the money well. But does that mean that we are too risk-averse and so won’t ever reach new audiences?
Is it always fair to ask people to be involved?
I had a very stimulating conversation about public involvement and co-production and whether it is always fair to expect people to get involved. How do we tackle the challenges of diversity and under-represented voices when, for some individuals, it might just not be fair to add another burden (ie contributing to research) on top when their circumstances might already be very challenging.
We’ve got just over a week until our storytelling event and our time is very stretched getting everything ready for that. But I just want to pause for a minute and summarise some of my key learnings in the last week.
I am really proud of my new skills in how to monitor and evaluate
We’ve been lucky to work with independent evaluators Jai and
Catherine (commissioned by INVOLVE to evaluate the whole project) and
it’s been so invaluable. They’ve made us realise all the assumptions we’d made
within our project. By recognising these, we can make sure we ask the right
questions to establish exactly what aspects of the project do or don’t work in
That doesn’t make me any good at documenting my learning formally
Journaling is one of the means of documenting our learning
as we go but it’s proving difficult to find the time to do it properly. This
project is time consuming, and at points is all consuming. We’ll have a meeting
or conversation which will make a huge change or provide some insight and
learnings but we don’t then have the time to sit and reflect on this, then
document that – we’ve already moved onto the next meeting or activity. We need
to correct this, and that’s one of the reasons I’m writing this post. You can
expect to see more reflective posts – on past and current activities.
Working with a creative mind is amazing
brings such a wealth of experience to the table and she doesn’t find it
difficult at all to come up with more engaging ways to do something. We were
unsure of how to introduce the next stage of the project at the end of the
storytelling workshop (the CCAG – more on that later). We just knew we didn’t
want a formal presentation or to put people off by overcomplicating it or
putting pressure on individuals. Debs suggested that one person could be
interviewed by another. We’ve seen Debs do this at another event, and it felt really authentic and
interesting, and seemed to be a format that resonated with the audience. We’d
have never thought of this on our own.
Don’t forget to address “what’s in it for them?”
once again reminded us about to address ‘what’s in it for them’ in some of our
communications materials. This is not the first time this has come up, and yet
we keep forgetting. We have two different groups to address in our projects –
communities/organisations as a whole, and the individuals who take part in the
project. Alex has provided some guidance, from his experience, about what might
appeal to each of these. We’ll be asking people if that is of interest when we
chat more with them.
I have my own barriers to working with new audiences
I find working in public involvement extremely rewarding, but it’s also an area where you have to constantly adapt, and it’s often very difficult to predict how much time or resource a project requires. Reaching Out has been no different. It’s such an exciting project but it’s also been difficult to fit it all in around my normal work load.
We’ve needed to give up our weekends and evenings. I’ve learnt what my own barriers are and been pushed outside of my comfort zone. For example, I’m not even that great at networking at an academic conference – so me walking into someone else’s comfortable space and having to approach them has been tough. Once I’ve got through my own barrier, everyone has been so approachable and so willing to talk. This does lead to the question of how many of these ‘barriers’ to involvement are we creating ourselves?
Board in the City is no ordinary cafe. It is a not-for-profit, community-run café dedicated to playing board games, and is staffed largely by volunteers. This cosy place is in the heart of one of Southampton’s most diverse neighbourhood and hosts a variety of community events – including our upcoming storytelling workshop. Hayley Binstead, cafe owner, has been a valuable partner in the early days of designing the project – bringing her passion, enthusiasm and experience.
Using a ‘needs-based place-based’ approach, it was important to take our project out of the hospitals and universities and into informal, comfortable and approachable environments. This is what makes the café such a valuable partner to us, and the perfect setting for our first event. We also needed a place that is accessible, inclusive and safe. These values are at the heart of café, which prides itself on its all-inclusive atmosphere.
Board in the City do a lot of community work: their first year was dedicated to education, the second to assisted living for elderly people, and their current focus is on mental health and wellbeing. By hosting our event here, we are supporting a company whose ethos fits with our project.
We are proud to be working with Board
in the City, and look forward to welcome our community leaders to its doors to
share their stories.
With the concept of storytelling in mind, we wanted to harness some of the inspiring and creative arts and wellbeing activities in Southampton, and draw on the expertise of those who have the skills and knowledge to help us create a more meaningful event.
Enter Debs Carter at Touch Network…
Touch Network is a not-for-profit charity who run storytelling workshops, with the aim of helping people to confidently talk about their story through celebration events held in coffee shops, bars, restaurants and other interesting and sociable places.
Local people and communities are invited to come and connect with real-life stories in a safe and relaxing environment. Touch Network addresses wellbeing needs in a non-stigmatizing way, enabling people to talk about their lives, connect and have fun in a positive and inspirational way, without it feeling or looking like a ‘wellbeing’ or ‘mental health’ event (which can often act as a barrier for people).
Using this platform to share and hear stories, attendees of Touch Network’s events cheer each other on, learn from each other, and feel more inspired, hopeful and resilient.
We met with Debra Carter, founder of Touch Network in the development of Reaching Out, and she quickly became an invaluable partner, working with us to plan the storytelling activity. Debs has extensive experience of running community outreach events in a dynamic, creative and approachable way, and will facilitate our upcoming storytelling event.
Public Involvement in research is a powerful, potentially landscape changing, tool. Putting patients at the heart of service design, treatment and intervention development, priority setting, and implementation is part of a changing ethos and culture within the NHS and academia.
The potential impact of Pubic Involvement is huge; shaping the way we understand, research, and deliver healthcare through the direct involvement and collaboration of those people it affects. Working with patients and members of the public can provide different perspectives, an ‘on the ground’ understanding of the needs and barriers service users face. It helps us make sure we research the questions that actually matter, and that changes to services are appropriate. It is underpinned by democratic principles, and can play a role across wider society to help ‘de-mystify’ research.
Our previous work…
Some preliminary work undertaken by our team evidences some of the issues faced in Public Involvement. Our ‘diversity motoring’ project looked at demographic data from public contributors working with local organisations, and compared this to the wider demographics of the corresponding Wessex population. Findings from this work included an over-representation of those with high levels of educational attainment and an under-representation from ethnic minority backgrounds.
So, what’s the problem?
We know that health inequalities exist. We also know that different people access services differently, through different means and with different priorities.
As advocates for the patient voice, we believe that part of reducing health inequalities relies on addressing issues around diversity in service user involvement. Our work suggests that people from some marginalised or under-represented groups are not being offered the opportunity to shape and influence research happening locally. The outcome of this could mean services are not tailored to the needs of these groups, despite them often experiencing disproportionately poor health outcomes. The downstream effect of this can result in the potential for further increasing health inequalities in our communities.
Reaching Out Southampton
This blog details our experience of delivering on a project called ‘Reaching Out’. The project is a collaboration with community groups, to design and deliver opportunities for involvement in the heart of communities. By taking Public Involvement out of a clinical or academic setting, and into the community we are hoping to reach previously unheard voices.