Welcome to your Wrapped, Fuse Open Science Blog

Posted by Mark Welford, Fuse Communications Manager, Teesside University

If you use Spotify (other streaming platforms are available) then you will no doubt have received your own personalised ‘Wrapped 2022’. A helpful (if somewhat creepy!) summary of your annual listening habits in one eye-searing psychedelically coloured package. Apparently, my most listened to song in 2022 was Baby Shark - I have a 3 year old.

Around this time of year I do a similar (if slightly less garish) job of pulling together the top 5 Fuse blog posts from the previous year.

But this year is a little different.

It’s award season and this year the blogs listed below were in the running for a coveted gong. Not at the GRAMMYs, Oscars, Emmys, BAFTAs, or BRITs but the (much more prestigious) first ever Fuse Awards!

Earlier this week (30 January), the post with the most views was crowned best blog of 2022 with the author awarded a shiny trophy at our ceremony in Durham *link may contain SPOILERS*.

So without further ado, here is the full list of the runners and writers in reverse order, culminating with the post that received the most views...

5. Planning for a healthier future?

Posted by Tim Townshend, Professor of Urban Design for Health, Newcastle University

“...primarily designing around the needs of the private car - rather than humans - has been a disaster.”

Prof Townshend explores how we can plan for a healthier future by intervening in the built environment. From the 'toxic high street', to the green (and blue) spaces in our cities that encourage physical activity and social interaction, positive for physical health and mental wellbeing.

Posted: 13 May 2022

4. Science, and the art of communication

Posted by Louis Goffe, Research Associate, NIHR Policy Research Unit in Behavioural Science

"...building the evidence-base isn’t enough, we all need to work on at least one aspect of the artistic craft of research promotion."

COVID19 has brought into sharp focus that health promotion takes more than good science, there is an art to the delivery. In this post, Louis explores vaccine misinformation, the infodemic, involving the public and advocacy.

Posted: 28 January 2022

3. What support do children and young people actually want when their parents use drugs and alcohol?

Posted by Cassey Muir, Fuse & NIHR School for Public health Research (SPHR) funded PhD Researcher from Newcastle University and Kira Terry, Lived Experience Expert.

“No-one has ever asked me about how I feel in any of this.”

Fuse PhD student Cassey shares her research aiming to understand the experiences, perceived impacts and coping strategies of young people whose parents use substances. The post ends with Kira’s thoughts about contributing to the project as a Lived Experience Research Advisor.

Posted: 9 December 2022

2. Is a picture truly worth a thousand words?

Posted by Emma Adams, NIHR ARC NENC Mental Health Fellow at Newcastle University, and Experts by Experience from Fulfilling Lives Newcastle Gateshead & #HealthNow Newcastle

Find out how Emma and her Experts by Experience worked together to develop striking visuals to share what they had learned from a study exploring access to community based mental health and substance use support during the COVID-19 pandemic for individuals experiencing homelessness and those providing support.

Posted: 25 March 2022

And in at number one our award winner...

1. Universal Credit experiences and research co-production

Posted by David Black, Fuse Public Partner and Expert by Experience. Introduction by Mandy Cheetham, Research Fellow in the Applied Research Collaboration North East and North Cumbria (ARC NENC), Northumbria University

“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.”

Ever wondered how you could help shape research as a member of the public? In this Fuse blog, David shares his personal experiences of claiming benefits and how this has informed research to assess the impact of Universal Credit.

Posted: 11 March 2022

Below is a photo of David (second from the right) along with the other Fuse Award winners. Congratulations to all! 

 

Many thanks to everyone who joined us for the first ever Fuse Awards @durham_uni and a huge congratulations to our winners and those shortlisted! 🏆🎉🤩

The standard of entries was exceptional and our panel of judges had tough decisions to make in all categories.#FuseAwards23 pic.twitter.com/uJimaKDzc7

— Fuse (@fuse_online) January 31, 2023

Catch up with all the award winners using #FuseAwards23 or see the event programme on the Fuse website for all those shortlisted.

Join Fuse to be in with a shout of winning a coveted Fuse Award in 2024!

Is a picture truly worth a thousand words?

Posted by Emma Adams, NIHR ARC NENC Mental Health Fellow at Newcastle University, and Experts by Experience from Fulfilling Lives Newcastle Gateshead & #HealthNow Newcastle

An illustration of me! Taken from one of the images
below created by Siân from More than Minutes

We have all heard some variation on the saying “a picture is worth a thousand words”, and yet often information is shared through large reports with thousands of words and few images. A 2019 paper published in Nature Communications highlighted that with all the information people can read, gaining people’s attention is increasingly difficult.

Take the image of me (right), it tells you about my hair colour, glasses, outfit, that I'm partial to a tea or coffee and that I am sitting at a table. If I had written a description of everything that you can get from the picture, it would have likely taken up far more space. If it were me, I would probably only have skimmed the text. As a public health researcher, part of my job is finding ways to share research findings in a way that will engage people to want to learn more and have a conversation (something we in Fuse like to call knowledge translation).

Alongside my Experts by Experience (individuals with lived experience of homelessness, mental ill-health, and/or substance use) we began to ponder how to share what we learned from our NIHR School for Public Health Research (SPHR) funded study exploring access to community based mental health and substance use support during the COVID-19 pandemic for individuals experiencing homelessness and those providing support. We had finally reached a point where there was a light at the end of the tunnel, as we moved away from understanding to sharing the findings. Yes, we figured we would write a couple of papers, attend some conferences, and likely write a report, but the bigger question was would the people in policy and practice and individuals experiencing homelessness read those documents? While trying to be nice, one person levelled with me and said Emma, “I’m probably not going to share a PowerPoint with a friend” and another said, “I don’t even know what that journal is”. Quickly the realisation sunk in that we were going to have to come up with a better solution for sharing our findings.

I began to think about visuals but realised my failed attempts at drawing stick people meant I probably would not be able to do this on my own. Two of the Experts by Experience spoke about a visual they had seen designed by More than Minutes for a peer research study around barriers to accessing care and treatment for people experiencing homelessness (#HealthNowManchester). I realised in that moment we had found our answer. Suddenly the Zoom call was abuzz with energy as everyone got excited about what story our visual might tell. As one person said, “it’s aimed at people who can’t read or write, or have a disability - someone like my brother”. Perhaps even more insightful was the comment that, “it [a visual] could have a different meaning for each person depending on their own experience”. 

We met with Siân (an illustrator from More than Minutes) and began planning the image and figuring out how to depict our endless pages of ideas into a visual that was engaging without being overwhelming. Over the next few months, we had a bit of back and forth on what we were envisioning. When the initial pencil sketch arrived, we were shocked at how the images captured so much of what we wanted to share without being a visual overload. Like kids at Christmas, we sat in suspense waiting to see what the final colour version would look like. We knew it captured exactly what we wanted when we saw the coloured versions. It was the physical depiction of everything we had learned and would proudly adorn our homes and offices! Through working with Experts by Experience and having input from colleagues in practice, we believe we have created a poster that depicts the experiences without some of the stigma we often see. Each of us saw something a little bit different in the poster, and we could not wait to share it with friends, colleagues, and providers. 

Created by Siân from More than Minutes; See the full images on the NIHR School for Public Health Research website.

Having had the experience of seeing words and quotes come to life, I cannot wait to do it again. Although we will continue to write papers and reports, the ability to share the images from our phones or by email with anyone has made us think about other creative ways to communicate research in the future.

So, I end this post with a question for you, do these pictures tell a better story of the findings than a one-page summary would have? Between you, me, and our Experts by Experience, we will be returning to this visual time-and-time again whereas the paper and report might not have the same reach and engagement. 

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To make this visual freely accessible, we would welcome organisations printing their own copies. If you are printing the poster, please print it in its entirety and email Emma Adams emma.adams@newcastle.ac.uk so we can see all the places sharing our findings. A limited number of printed posters are available directly from Emma for pick up from Newcastle University.

Initial findings from Emma’s study have now been published in the International Journal of Environmental Research and Public Health.

A Fuse Research Programme Meeting is planned to share more information about Emma’s study. Stay tuned for the save the date and further information. 

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Emma is a Mental Health Fellow for the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) and a previous NIHR School for Public Health Research (SPHR) Pre-Doctoral Fellow.  Her study 'Exploring and understanding access to community-based mental health and addiction services in Newcastle and Gateshead' is NIHR SPHR ResNet funded.

This project is funded by/supported by the National Institute for Health Research (NIHR) School for Public Health Research (SPHR) (Grant Reference Number PD-SPH-2015-10025). Emma was supported by the NIHR SPHR Pre-doctoral Fellowship Funding Scheme (Grant Reference Number PD-SPH-2015). Emma is now supported by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) (NIHR200173). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Cookies, coffee and co-production during Covid

Posted by Emma Adams, Fuse/NIHR School for Public Health Research (SPHR) Pre-doctoral Fellow at Newcastle University, in collaboration with Experts by Experience from Fulfilling Lives Newcastle Gateshead and #HealthNow Newcastle

Photo taken by Jeff Parker (one of the individuals with lived experience involved in our
co-production) of the masks he made for each of us at our first face-to-face meeting. 

COVID-19, has forced all researchers to re-think engagement and how we work with people with lived experience. I like many, have been navigating how best to do this within my study that aims to explore and understand access to community-based mental health and substance use support in Newcastle and Gateshead for those experiencing homelessness during the pandemic.

Since March 2020 I have been collaborating with five people with personal experience of homelessness, mental health, and/or substance use to co-produce the analysis for this study. During that time we have discovered a very helpful approach (albeit with an imposing name) - Interpretative Phenomenological Analysis.

Here comes the science…

This approach was very reflective and recognised that we were trying to understand how our participants made sense of what had happened to them. We wrote exploratory comments to reflect on the word-for-word text from interviews and then used both to develop themes. This approach lent itself really well to our analysis, as we found it was less rigid than other coding-based approaches (such as thematic analysis) and had more opportunity for reflection. 

The saying ‘no two things are alike’ describes how we ran our co-production meetings given COVID-19 restrictions. We sent out printed packages with anonymised transcripts for comments, held Zoom meetings to discuss our comments and thoughts, hosted in-person meetings with sticky notes and marker pens to develop themes and unpick key ideas, and used physical and virtual highlighters to identify our top quotes. Accompanied with a healthy amount of coffee, baked treats, and fruit, we set our sights on trying to understand our data. We broke down each analysis into three sessions, with the first session focussed on reviewing the transcripts and writing comments, the second focussed on developing some initial themes, and the third focussed on identifying and refining all the themes and key quotes.

Friendship, findings and reflections

We are now starting to share initial findings and determine creative ways to present the information. Having built a strong friendship, we reflected on how much we enjoyed the collaborative co-production experience, despite the circumstances created by COVID. We also reflected that not all co-production is positive. Here we share a few thoughts from the experience.

Why did you become involved in the study?
Everyone in our group felt motivated by the opportunity to have their voices heard and make a difference.

"Because I am interested in how the pandemic has affected people and am a member of the Experts by Experience and would like to change things for the better" – Joanne

"I wanted to do a different sort of user health research having done some last year in Newcastle for Crisis and Groundswell. Getting involved in analysing the anonymised data was a fantastic opportunity for myself" – Tony

What did you enjoy and learn?
Everyone enjoyed being involved as the research continued to grow and their continuous involvement meant we could develop friendships.

"Actually being involved from start to finish, Emma baking" – Jeff

"Analysing some of the data and the group! I feel new friendships have been made" – Fiona

 Although different learnings were shared, it was clear that everyone enjoyed working in a team to try out new things and have a ‘behind the scenes’ peak into doing research.

"One day I would really like to do more of this work in a permanent position as part of my continuing personal development. So it was very nice to get the opportunity to find out what this sort of work entailed and whether or not I would enjoy doing it too" – Tony

"Co-production can really work if it's formulated with an organic and lived experience perspective at the heart of the study, the information gathered was not lost in translation and the language from participants' interview was not tampered with" – Des

What did you find challenging and wish researchers knew?
Forcing ourselves to think about some of the things we all found challenging, we realised it is important to touch base with people involved in co-production to understand what they are struggling with and how they can be better supported.

"Biggest problem I have is getting to a venue, I have anxiety issues travelling by bus" – Jeff

"Emma would send me a gentle reminder a few days before work was due and it would spur me to either start, or finish off and get the work sent in. This really helped me" – Fiona

What would you say to a friend about getting involved in research?
Across the board, everyone said they want to continue to be involved in research projects and would encourage friends to do so.

"At first it might fly over the top of your head, but give it time and you will learn things you never knew you were capable of" – Joanne

"Go for it, maybe you can help affect change that will help others who have been through what you have. Plus, you’ll make some new friends and may enjoy yourself too" – Jeff

What are you most excited about?
When asked about what they were most looking forward to and anything else they wanted to share, responses ranged from gaining specific experience, to celebrating successes.

"It made a nice change to be more involved and now I’m doing more research with Crisis its helped me to help them shape how it can be done and how sense making is carried out" – Jeff

"The biggest rush of the project was to receive an email from the Lancet after we submitted a piece on the work. If it gets published, I’m throwing a party" – Fiona

"Emma has kept us updated throughout and involvement moving forward looks bright … and on the back of this there is confidence to come back to the university and vice versa in other research projects" – Des

Lessons learned from a researcher perspective

The depth and richness gained through co-producing my analysis is something I could have never done on my own. I learned that it is okay to admit when you are feeling a bit lost about the best approach, as that allows for an open dialogue to determine what can be done to make things better. Through our co-production, I realised how to make findings more accessible and engaging for everyone. The pandemic has meant that we have all missed out on in-person contact. Listening to our group I was shocked and humbled by how much the little touches mattered; well-timed cookies or an invite for a coffee chat can make a big difference. These small touches allowed me to develop relationships with everyone and have frank and honest conversations. From this experience, I have learned that you do not need to wait until you have findings to make a difference, rather you have a chance through co-production to make lasting impacts across the span of your research project.

Emma's study 'Exploring and understanding access to community-based mental health and addiction services in Newcastle and Gateshead' is NIHR School for Public Health Research (SPHR) ResNet funded.

This project is funded by/ supported by the National Institute for Health Research (NIHR) School for Public Health Research (Grant Reference Number PD-SPH-2015-10025). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Summer school at home: Learning online and adapting research to reach the ‘hard to reach’

Posted by Emma Adams, Newcastle University, and Jo Dawes, University College London, NIHR School for Public Health Research (SPHR) Pre-Doctoral Fellows

Starting a new post in a new institution just as a global pandemic and lockdown sweeps the UK is not how we envisaged beginning our NIHR School for Public Health Research (SPHR) fellowships. When our training and development allowance letters came through initial thoughts were to delay booking any training until it was possible to attend in person. However, as time passed, it became clear we may be waiting some time. This realisation coincided with hearing about the “Applied Research Methods with hidden, marginal and excluded populations” course run by Nuffield College, University of Oxford. The course is usually a weeklong residential summer school, but this year it was offered online. The idea of spending five full days sitting at home doing online learning seemed a disappointing second best to a week in Oxford and somewhat limited our enthusiasm. However, these concerns were misplaced. We could not believe how engaging the course was, with tutor Andrea Rossi doing an excellent job of varying the activities, keeping us captivated and packing the course with relevant, interesting, and interactive tasks. 

For this ‘participatory research method’ we were given 5 minutes to create a map of our childhood community, using items we could easily reach. The task was designed as an ‘icebreaker’ activity to start a conversation about our childhoods. Using available objects, rather than drawing, takes away any pressure interviewees might feel about their aptitude for drawing. This activity could be adapted in rural communities using found items outside. Once my map was created, I talked about the map and why I had highlighted specific aspects of my community - this is the point at which ‘data collection’ might start.

Beginning with what makes a population ‘hard to reach’, we were armed with the linguistic tools to define whether our population was hidden, marginal, elusive, rare, excluded, or blurred (see Table 1 for breakdown). By breaking down populations into these different categories, we were better able to understand approaches for reaching and involving them in research. People experiencing homelessness may be perceived as ‘hard to reach’, when in fact they might just be elusive (purposely hiding or not reporting). If we, as researchers, recognise individuals may be making a conscious decision not to report, then perhaps we need to build a foundation of trust. The responsibility a researcher has to find ways to reach the ‘hard to reach’ was one of the most important things that we learned. 

With optimism that the virtual learning might not be as onerous as we had feared, we jumped into three days of research methods (both qualitative and quantitative). Challenging us to approach every technique from both the researcher and participant perspective, we were pulled out of our comfort zones and into creatively mixing research techniques. Opportunities to transform recruitment strategies (such as respondent driven sampling into a data collection tool for analysing social networks were explored. Learning to make the interview experience more interactive challenged our preconceptions of data collection - ever thought about asking a participant to reconstruct an important/memorable place with only items in their kitchen? Having experienced this first-hand, we both agree it was a great facilitation tool as a participant and researcher. The breadth of material in the course left us feeling that it was a week well spent, despite the initial apprehension and sitting at a computer in the blistering summer heat.

As a result of attending this course, we have already adapted how we approach our research activities. Jo was struggling to define a ‘hard to reach’ population in a patient and public involvement (PPI) paper. The course provided real clarity about this topic and helped her confidently address this definition in her writing. Emma was trying to find a way to approach recruitment and the re-shaping and framing of populations has provided me with optimism about my future recruitment strategy.

There is no doubt that by learning online instead of face-to-face, we really missed out on networking opportunities with our course peers - nothing could really replace a good natter over coffee. Conversely, the online nature of the course really opened up the cohort - we were learning with people sitting in their homes in England, Wales, Switzerland, France and Germany, while our tutor taught us from his apartment in Bangkok. Perhaps without being online, we would have been a far less international cohort. After undertaking this excellent course, we certainly feel more positive about online learning, how engaging it can be and how - in these uncertain times - it is important to not simply wait for face-to-face learning to return as the norm. The variety of learning and research activities we used online challenged us to translate so much of what we usually do face-to-face to our ‘virtual classroom’. As a result, we developed skills in how to adapt our current methods of communication in our research.

Our take home messages from the course:

1. Online research and learning can work well if you are creative and willing to be flexible.
2. Researchers must consider reasons some populations are ‘hard to reach' (are they rare, hidden, elusive, marginal, excluded or blurred?).
3. When you recognise WHY a group of people are ‘hard to reach’, you must adapt your research methods to better reach them.
4. Through mixing methods/data sources you can strengthen your understanding of ‘hard to reach’ groups.