The Fuse conference in four Public Partner poems

How to capture the essence of a conference about setbacks, successes and 'brilliant failures' in public health research - an event report, a news story, the results of a survey?  What about in the prose of our public partners who provided their expertise as panellists?  That is what they suggested and here they are.

The 5th Fuse International Conference on Knowledge Exchange in Public Health took place between 15-16 June 2022 in Newcastle upon Tyne.  Find out more about the event, speakers and panellists on the conference website.

..the Fuse experience

PJ Atkinson, public member of Gateshead Poverty Truth Commission

PJ in the centre of a fishbowl conversation

Recently I was Invited to chat with Fuse.

Well it was a Wednesday, had nowt to lose.

They numerify and storify researching for Public Health.

And let me tell you, with very little wealth.

We had main stage speakers, panels, and side room topics, it was never droll, even sat in a fish bowl!!!

We discussed, pyramid breaking, old ideas smashing, and reforming, these people are fun never boring.

But most of all, they turn setbacks into learning, with passion and resolve.

Fuse and its people, want to adapt, grow and evolve.

Knowledge Flow

David Black, Fuse public partner and hospital governor 

(r-l) David and Irene providing their expertise on how to turn setbacks in knowledge exchange into successes

After waiting too long the day came along and it's off to the conference for me.

Knowing where I'm going, despite the traffic slowing, I'm knowing I'll be on time.

Must listen today then whisk my thoughts away to plan what I'll say tomorrow.

A script's what I need after taking heed of the need for brevity.

 

We're off and running, the introductions are made and it's welcome to one and all.

A programme, like life, which can be subject to change.

Reflections on knowledge mobilisation and mistakes.

Evidence of local knowledge exchanged at place.

 

Amid the plethora of parallel sessions and plenary panels.

The exchange of views over coffees and teas.

The paper presentations and interactive poster sessions.

Fishbowls of hot topics and Cabaret of dangerous ideas.

 

A modicum of the local and a smorgasbord of internationalism.

I entered to play at the start of the day, full of eagerness to learn.

To share a thought and to be taught a lesson by all in attendance.

Public health, its impacts and strength of this particular human endeavour.

 

Day two is here and I'm ready, with no fear.

Up on the stage, knowing what to say and trying to keep it brief.

Then before you know it's off, we go and ending with applause all-round.

To have a voice and speak it out, it's a great place to be.

 

Good feedback I'm feeling, plenary speaking's appealing.

Networking and knowledge sharing, I'm doing.

A supportive, safe space, it's a real great place.

For setbacks and solutions to be shared.

 

So, to the end game, the main themes and learning all noted.

My highlight, the brilliant afternoon keynote.

Institute of Brilliant Failures with celebration, laughter, a new way of thinking.

A refreshing concept, informing my future knowledge sharing and learning.

My First Fuse Conference

Margaret Ogden, Patient and Public Involvement (PPI) representative from County Durham

Margaret (right) sharing her experience of the importance of setbacks in knowledge exchange in public health

I went to the Fuse conference in mid June 22

PPI members were invited, I met more than a few

The focus was knowledge exchange, so meaningful to me

In presenting I’d soon see how dynamic I could be

I loved the international element to this annual conference

Diversity was a theme that would get so much reference

Seldom heard communities, always a huge challenge

Dissemination of info too, a challenging thing to manage

Just how effective can knowledge exchange be

With the right expertise, it can be achieved quite easily.


I began my talk with detail of a planned PPI event

That didn’t go well, in spite of the hours which we spent

Planning, collaborating, finding the right venue

But with few attendees present, it can all go askew

We’d do better next time, was our overriding thought

For on that occasion, limited data was caught

I also referred to a further memorable meeting

Where conflict had arisen, it could have been defeating

It was really a clash of people with strong wills

I had to dig deep for new negotiating skills.


As a panel, I felt we made a great team

This experience had totally elevated my self esteem

My first face to face high profile event

At a nearby location, that was heaven sent

My mobility had worsened in the last two years

Confidence had been dented, I now had fears

I needed to get stamina back and level of fitness

I imagine my struggles were hard to witness

But as I move forward with determination and fortitude

I thanked my hosts for the invite which I’d accepted with gratitude

I didn’t make the second day of this interactive event

That had been a real shame, was my only lament.

Knitting out the Knots 

Irene Soulsby, Fuse public member from Gateshead
 

We talked a lot 

Knitting out the knots 

We talked and talked and talked 

A LOT! 

Knitting out the knots 

Comparing designs 

Line by line 

Reknitting stiches  

Holes and lines 

Redesigning our designs 

Comparing setbacks and successes 

Knitting them into things that would impress us  

Learning from each other 

With enthusiasm and sharing 

Creating our new designs.

Many thanks to our public partners for taking the time to write their fantastic poems for this Fuse Open Science Blog. 

If you are interested in joining the Fuse Public Partner Network please visit the dedicated Public Involvement section on our website.

Universal Credit experiences and research co-production

Introduction by Mandy Cheetham, Research Fellow in the Applied Research Collaboration North East and North Cumbria (ARC NENC), Northumbria University

I contacted David in my role as public involvement lead for the NIHR funded study on Universal Credit. As a research team, we made a commitment to include the views of people with experience of claiming Universal Credit as part of our public involvement and engagement activities. David very kindly offered his assistance and has been one of the contributors who have helped shape the study so far.

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Posted by David Black, Fuse Public Partner and Expert by Experience

David takes part in a wide variety of public involvement and engagement activities  

I had noted many observations during my experience of engaging with the Universal Credit system and had a little experience of welfare benefits in a previous roll assessing applications for legal aid. As I'd been involved in co-production work relating to clinical research and healthy ageing in a number of patient and public involvement roles, I knew what would be expected of me in terms of sharing my perspectives about Universal Credit with the research team. Preparation prior to the initial meeting was key to getting my messages across, so I made some notes and checked out dates and relevant facts about the benefit online.

The messages I wanted to share about Universal Credit related to my direct experience and also what I'd see at local libraries when other people had been trying to use computers to apply for the benefit and respond to requests from the Department for Work and Pensions (DWP) that were expected to be done online. Some of the people trying to use computers were clearly struggling and I found myself and the librarians were regularly asked for assistance. I'm a helpful kind of person, so I would try my best to assist. Many of the people I met did not have the basic computer skills necessary to complete what was requested and with a time limit on computer access at the library, it was often a struggle.

As part of my co-production work I shared my experience of the initial application process and explained to the researchers that I had to go to my local library with all of my personal data in document form in order to complete the online application. It took me an hour and I was concerned that I had all the information to complete the form in full in one go. One of the frustrations I had related was the process of proving your identity via an online checking tool. Having initially been relieved once I'd got the main online form completed and saved, I found myself beaten by the simple process of proving who I was! The system simply did not work for me in this regard and after going home and phoning the DWP I was given an appointment to go to a Jobcentre to complete this process manually.

It was clear to me what information I wanted to share with the researchers and the fact that they were good listeners and gave me the time and space to explain my experiences helped a great deal. In the past I'd always found the process of seeking help from the unemployment benefit system to be relatively easy, but Universal Credit was a disaster for me. Not only did the DWP assume all claimants had access to the internet all of the time - something that I did not have until the pandemic started, which was years after my experiences of Universal Credit - but a constant stream of text messages in relation to Universal Credit created a state of panic and worry for me.

An important message I got across to the researchers was that ultimately I was deemed to not qualify for Universal Credit and left without any help or assistance. Something I'd never experienced when I'd previously reached out for help from the state system. Continuing my co-production work with researchers in this area of study has given me an immense sense of pride and satisfaction. I hope that in working on this research in some small way I can assist in the future understanding of how changes to benefits and the wider government welfare system can have real impact on the lives and wellbeing of people.

Find out more about the research here - Assessing the impact of Universal Credit on mental health and wellbeing.

If you are interested in becoming a Fuse Public Partner, please visit the Public Involvement page on the Fuse website.

How do we improve diversity in research?

Posted by Vicki McGowan, Research Associate, Newcastle University

Public involvement and engagement in research is not a new concept. Without members of the public engaging with our work as participants, we would not have advanced our knowledge and understanding of the social world over the last few hundred years. More recently the Covid-19 vaccination would not have been so rapidly produced without generous support from the public in giving up their time (and bodily fluids) to advance our understanding. What seems to be a more relatively recent idea is the involvement of the public in developing the research itself and setting the agenda based on their experiences. Newer still is the idea that there should be a diversity of voices at the table where these decisions are made. In 2014 the Due North report made a series of recommendations to address inequalities between the North and South of England.

In order to take forward these recommendations academics across the North developed the Fuse led Equal North network which aimed to build a community of academics, policy makers, and practitioners across the region to work collaboratively on addressing the North-South health divide. This community came together in workshops to identify priorities for addressing this spatial inequality, and around 250 professional participants highlighted poverty, austerity, and unemployment as key research areas to ‘level up’ the northern regions (Addison et al, 2019).

Equal England academic and practitioner priority setting workshop hosted by Fuse

But, this was only one part of the story.

It was an important side of the story, and I’m sure many members of the public would agree that poverty, austerity, and unemployment were – and indeed are – priority topics, but we needed their perspectives to ensure we were developing research that addresses these drivers of inequality and doesn’t widen them further.

But also, we’d been talking about tackling inequality at the same time as maintaining unequal access to decision-making by not including all key stakeholders in the discussion. So, when the NIHR School for Public Health Research funded the expansion of Equal North to become Equal England, we increased our practitioner membership to over 800, but we also ensured that we could take forward recommendation 3 from Due North: 

“Share power over resources and increase the influence that the public has on how resources are used to improve the determinants of health”

The Equal England Public Network was born in late 2019. Following the practitioner model developed in Equal North, we aimed to create a space for members of the public to share lived experiences and influence the work that we do and undertake some public priority setting exercises to see how these align with the Equal North work. We’d also share information about key events, new evidence, and generally keep people updated with health inequalities research as we do the practitioner network.

That was the plan, now the action. How do you develop a diverse network to engage with members of the public with lived experience of poverty, austerity, and unemployment?

One option could be to contact the numerous, and brilliant, existing Public and Patient Involvement (PPI) groups that operate across the country. Why reinvent the wheel? If that wheel only comes in one style and doesn’t fit my bike then we may have a problem. These established groups might not accurately represent the diversity we see in our communities.

Also, these can be established groups that by their tenure already have the confidence and capacity to exert influence over research agendas and I wanted to make sure we had representation from people who don’t usually have their voices heard in the communities that are affected by the priority areas identified through Equal North.

To ensure we were accessible to a diversity of voices we aimed to pilot the network in North East England to build on the Equal North findings and implement three phases:

Phase 1: Connect with local grassroots groups that are embedded in their communities, promote the network at relevant community events, generally get out into communities across the North East and get to know people, develop trust and sign people up to our mailing list.

Phase 2: Invite members to a series of local conversations, present the findings from Equal North and discuss whether people thought these were important for their communities, whether there were other priorities, and what we needed to do to address them.

Phase 3: Co-develop research proposals around these priorities and dissemination activities with academics and practitioners – making sure the public experiences were disseminated widely and incorporated into future planning.

By February 2020, Phase 1 was going well with 35 members of the public signing up to the network. And then…

We were forced to cancel all face-to-face activities due to Covid-19. The country shut down and the vast majority of people I’d engaged with over the past few months were now focused on supporting their communities through the crisis.

People are furloughed and so volunteer at food banks, people lose their jobs, they lose loved ones to the virus, the grassroots level is not interested in me trying to encourage them online to talk about inequalities that PRE-EXISTED the virus and are now being made even worse. The public network gets locked down and we pause activity thinking it won’t be long before we’re back chatting over coffee.

A year later and we’re still not able to get together in person and our coffees are stone cold! However, during this time of crisis I focused on maintaining the network rather than trying to grow it. I kept in contact with our members via the mailing list and shared opportunities for engagement and to participate in, and develop, research. It didn’t seem right to actively pursue growth during a pandemic but, as our members represent wider groups within their communities, they have shared these opportunities and this has resulted in more members of the public signing up. We now have 57 official members from across the country who have been supporting and influencing the work we do. Amazingly during a pandemic, our public partners have supported the development of several health inequalities projects, contributed to covid-related inequalities research and influenced decisions over national priority funding around inequalities and prevention from the NIHR Applied Research Collaboration (ARC).

Key messages for ensuring diversity in research 

Identify trusted partners

Engage with your existing networks but identify people who are already trusted in their community. These people are probably the most important, whether we’re in a Covid or non-Covid world. Find them and work with them. Approach grassroots organisations, church leaders, sports groups, charities, hang out in coffee shops, community centres, pubs (when permitted!).

Actively seek out diverse groups

Don’t assume members of diverse groups will respond to your advert on Twitter, you must actively engage with groups and organisations that represent marginalised communities. If you’re unsure use tools like PROGRESS+ and HIAT as a guide to check you’re providing equity of access for members of diverse communities (these consider ethnicity, LGBT+, rural/urban, age, disability, economic disadvantage etc.).

Boots on the ground

Leave the comfort of your (home) office! Opportunity does not knock at your door, you need to go out and seek it. Pre-Covid this means being present in community spaces, libraries, coffee shops, markets and schools. During Covid this means using existing networks, online sessions, and setting up WhatsApp groups.

Give something back

Always give something back, that may be reimbursing people for their time or providing opportunities for training and skills sharing – and here I don’t just mean assuming we have skills that they want, perhaps members of the community want to share their skills with us. Develop reciprocal relationships, don’t just take from communities to boost your career!

Be patient

Developing trusted, meaningful, and reciprocal relationships takes time. Be patient. Do not underestimate how long it can take – I’ve been working with some groups for 6 years!

Manage expectations

But if you don’t have 6 years, be honest with people that your work is time sensitive and clearly articulate what you need and how people will be reimbursed if they’re able to help you. Don’t promise the moon on a stick if you can’t deliver!

Finally, blogs are also a great way to connect with diverse groups so don’t forget to add some shameless promotion: if you’re a member of the public reading this and would be interested in joining our network you can sign up here.

For more information about the development of the network, and other experiences of improving diversity in research, you can view a recording below of a recent joint NIHR School for Public Health Research / School for Primary Care Research webinar.

Why dramatic enquiry as a form of public engagement gave me my most enjoyable week as an academic

Guest post by Santosh Vijaykumar, Vice Chancellor’s Senior Research Fellow, Northumbria University

“It’s important to eat healthy but we also need sugars, although in moderation.” These are not the words of an expert on BBC’s Food Programme, but a Year 5 student at Chillingham Road Primary School in Newcastle, fidgety and impatient for the next activity to resume. And the caution came about not through a series of in-depth interviews by public health researchers such as myself, but through ‘dramatic enquiry’. Brad McCormick and Katy Vanden from Cap-a-Pie, the theatre company that developed this approach, describe it as one that “places participants in a fictional scenario where they are in-role from start to finish. They are placed in a situation where there is no clear ‘right’ or ‘wrong’ answer and where they have to express their own beliefs and values.”

Brad directing the drama

Over the course of a week, we conducted four such dramatic enquiry workshops with three schools in Newcastle, each session comprising approximately 30 Year 5 pupils (10-11 year olds). Although these workshops were part of the public engagement strategy of my ongoing ESRC funded project* that seeks to understand psychological drivers of confidence in probiotics products, we decided to explore broader themes beyond just probiotics. The aim – suggested by Brad and Katy and gladly welcomed by us – was to avoid a top-down health education approach, and instead utilise this engagement format to get children to think and talk about fundamental issues: why do they eat what they eat? Can food be healthy and unhealthy at the same time? Should the government control what foods we consume? What is the relationship between responsibility and choice in the context of food? We used these themes as a funnel to eventually involve the children in a discussion on probiotics.

Each workshop starts with the children seated in a semi-circle. As soon as they are settled, Brad catches them off guard. He starts shaking hands with one of them and says “I ate at your restaurant last week, superb!”, and then goes to another: “I read your article on raw food diets, so interesting!”, and so on and so forth, setting off a series of giggles or muffled peals of laughter among the children as they make sense of the goings on. Soon after they are informed that they are all members of the Food and Drink Committee of Arcadia (a fictional country) and are asked to take a pledge of allegiance to Arcadia. A series of dramatic games such as DilemmaRama, Shake Hands/High Fives and Stop/Go has now completely warmed them up to Brad and to each other. This lays the foundation for their enthusiastic participation in the ensuing small group activities, each of which is followed by a philosophical discussion or reflection.

The small-group activities include identifying and enacting their favourite dish in a freeze frame, contemplating what it means to be healthy, and explaining the rationale for why they agree or disagree with a certain food policy from different viewpoints (as a journalist, scientist, manufacturer, etc.). In the second half of the session, they are introduced to a fictional probiotics product, to develop a commercial for it, and then asked to make a decision about whether it should be sold after exposing them to news articles reporting conflicting evidence related to the health effects of probiotics products.

As a researcher, observing these sessions live can be tough – it’s so much fun, you want to participate with the kids and leave taking notes for later. And taking notes is not easy either, even after you have committed to it. For, you realise quickly that every activity and philosophical discussion reveals a new strand of thought among children, a sharp, counter-intuitive insight, or a larger ethical perspective. As someone who is newly baptised to this form of public engagement, I realise how uninhibited and enthusiastic kids are in terms of participating in what would seem tricky terrain for adults, and how even seemingly quieter kids volunteer to voice their opinions. I am beginning to understand how this approach lends itself to unearthing perspectives of greater complexity and nuance than a traditional research method, such as a survey or experiment would. Essentially, if one were to invest in dramatic enquiry as a means of formative research for investigating a public health problem, they would reap a rich, and dare I say endless harvest of research questions worth investigating in a format that’s fun, engaging, and revelatory.

If you are waiting to know what we learned from these workshops, I will share links to a podcast series (on this blog) sometime over the next few weeks. These podcasts will give you a more detailed idea about dramatic enquiry, how the participating children benefited from it, and some perspectives that emerged about how kids perceive scientists, media, and the industry that really surprised us.

When I first arrived into the UK academic environment in February 2017, public engagement seemed a policy or media interfacing, translational exercise for researchers. Being involved in dramatic enquiry has now broadened my personal understanding of public engagement and triggered a cascade of ideas about creative ways to get a conversation going with communities whose lives we seek to positively influence through public health research. And, without a doubt, it has given me my most enjoyable week in eight years as an academic. Brad and Katy deserve some chocolate cake, but in moderation.

*Acknowledgment: This project was funded by the Consumer Data Research Centre, an ESRC Data Investment, under project ID CDRC 085, ES/L011840/1; ES/L011891/1.