Moving from blame to support: rethinking food insecurity in diabetes

Posted by Ruth Boocock, Associate Professor and Dietitian, Teesside University, in Nutrition and Hydration Week.

This work started with a deceptively simple question: ‘How do clinicians identify food insecurity in people living with type 2 diabetes, and what actually helps once they do?’

By clinicians, I mean the people working directly with patients, for example GPs, nurses, dietitians, and others working in busy, often stretched diabetes services.

To explore this, I reviewed published research from across the world. Over many coffees, I read and debated papers, regularly asking other colleagues: ‘Is this really a pattern, or am I reading too much into it?’

What came through very clearly were the human stories beneath the data. Clinicians wanting to help, but constrained by time and systems. People with diabetes trying to manage blood glucose, while also worrying about whether there is enough food at home.

Asking about food only works if there’s something to offer next

Many clinicians want to ask patients about access to food and some already do, but the evidence shows that screening alone is not enough.

Without time, clear processes, or obvious referral routes, screening often stalls. I repeatedly came across similar experiences: ‘I asked the question. They said yes. And then I didn’t know what to do’. That moment matters. It can leave clinicians feeling stuck and distressed, and patients feeling exposed and unsupported.

One of the key messages from the evidence is that this isn’t about individual clinicians doing more. Food insecurity needs to be part of everyday systems, with prompts, shared responsibility across teams, and links to support that actually exists. Without that organisational backing, raising the issue of food tends to fall down the priority list, especially on busy clinic days.

Trust makes disclosure possible

You can’t script disclosure about food insecurity. People tend to talk when they feel listened to and not judged.

Shifts in practice, even just small changes in language came up repeatedly. A nurse replacing ‘Why aren’t you following the diet?’ with ‘What gets in the way?’ or a GP explaining ‘We ask everyone about access to food, because it can affect diabetes management.’

These shifts matter, they help move conversations away from blame and towards problem‑solving.

There was also a consistent tension between dietary advice and financial reality. Guidance may be clinically sound but still impossible to follow when money is tight. Recommended foods and ideal meal plans don’t always match what someone can afford or access.

Across the evidence, one message stood out, ‘Starting where people are really matters’. Advice framed around better, not perfect is far more likely to support engagement than aiming for an ideal that feels unreachable.

This isn’t something clinicians can fix alone

Many clinicians described feeling unsure where to send people for help. Knowledge of local food support was often limited or quickly out of date. Some avoided the conversation altogether, worried about raising an issue they couldn’t help with.

Where things seemed to work better was in areas with strong links between health services and community organisations such as food banks, pantries, community kitchens, and social prescribers. Not just signposting, but relationships and connection.

Another common theme was confidence and skills. Here, even when people accessed food support, they didn’t always feel able to turn unfamiliar ingredients into meals that worked for diabetes. Practical, community‑based support, including cooking sessions or simple recipe swaps helped bridge that gap.

What did I learn?

One of the biggest surprises was how rarely food insecurity appeared on its own. Transport costs, prepayment meters, missed appointments, and medication routines were often part of the same picture.

Stigma also ran throughout the existing research. Many people felt blamed for their diabetes and ashamed of needing help with food. Seen in that light, it becomes easier to understand why disclosure feels risky.

Perhaps most surprising was the impact of small system changes. Adding two evidence-based questions to patient records and a clear referral route doesn’t sound transformative. In practice, it can change conversations and access to support in very real ways.

Where I’ve landed

I started with the academic literature. I ended with a clearer sense that while food insecurity shows up in clinical settings, it isn’t something clinicians can or should be expected to solve alone.

If we want better diabetes outcomes, we need systems that make it:

• easier to ask about food
• realistic to respond to what we hear, and
• normal to work alongside community organisations beyond clinic walls.

My review is now published and available here.

If you’ve tried something that worked, or something that didn’t, I’d really like to hear about it. Being open about the messy space between screening and support feels like a good place to start.

Amplifying voices to tackle inequalities in South Asian and Muslim communities

Posted by Zeibeda Sattar, Assistant Professor in Health Policy, Northumbria University

L-R: Greta Defeyter, Humaira Khan and Zeb Sattar 

I recently had the opportunity to chair the Health Inequalities Symposium hosted by the Centre for Health and Social Equity (CHASE) at Northumbria University, in collaboration with Fuse. It was an incredible event that brought together over 100 people, including researchers, policymakers, healthcare providers, and community members, all focused on tackling the pressing health challenges facing South Asian and Muslim (SAM) communities. The main goal was clear: to find ways to bridge the gap between research and real-world impact.

The presentations were enlightening and underscored how critical it is to engage with minority communities effectively to shape public health services. Each speaker highlighted a different, but equally important, health issue impacting SAM communities. Public partner Humaira Khan, who co-chaired the symposium, pointed out that the mental health challenges facing South Asian and Muslim are often misunderstood and stigmatised. Hearing her talk about the need for culturally competent healthcare really hit home. Her words - “researchers are warriors; they don’t fight for themselves - they amplify the voices of the people” - perfectly captured why events like this matter.

“researchers are warriors; they don’t fight for themselves - they amplify the voices of the people” 

Humaira Khan, public partner

Dr Sarah Croke from the University of Manchester spoke about the language and cultural barriers that often lead to untreated health issues. This can leave community members struggling because healthcare services aren’t designed with South Asian and Muslim needs in mind. Dr Saeed Ahmed from Sunderland Royal Hospital took on the tough topic of organ donation disparities. He pointed out the harsh reality: SAM communities are in desperate need of organ transplants but are also among the least likely to donate. His call to raise awareness and educate was powerful, especially when he reminded us that one donor can change up to nine lives.

There were also discussions about everyday barriers that many of us face but rarely see addressed. Professor Defeyter from Northumbria University talked about the lack of culturally appropriate meals, like halal options, in schools. It was a reminder of how even things like food choices can create a sense of exclusion for our children and why legal changes to recognise cultural diversity are long overdue.

I found Simon Luddington’s (SearchNewcastle) presentation about the West-End Befrienders project particularly inspiring. It’s easy to forget how isolating language barriers can be and how vital social connections are for our wellbeing. Their work in bringing people together, especially in helping with access to primary care and breaking down isolation, felt like a model that should be replicated.

One of the more challenging discussions was around drug and alcohol use in our communities. Lydia Lochhead’s (Northumbria University) research laid bare the stigma that prevents so many from seeking help. It’s a tough conversation to have, but hearing about Mushtaq Dakri’s community-led approach to addiction support was a beacon of hope. They offer a holistic service - combining therapy, physical activity, and spirituality - and it’s designed by and for the SAM community. Knowing there’s a women-only support space now available shows their commitment to evolving and meeting community needs.

Fuse Associate Director Dr Floor Christie and Dr Rawand Jarrar from Sunderland University, wrapped up the day with their work on improving cancer screening uptake among Muslim women. Their workshops have reached over 260 women, and it’s encouraging to see how culturally sensitive approaches can genuinely improve health outcomes. This was a reminder of how vital it is to build services that reflect our communities.

As I reflect on the symposium, it’s clear to me that these health inequalities are not just about accessing services - they’re about how these services are designed and delivered. The urgency to address these gaps cannot be overstated. The event reinforced the need for services that truly understand and respect South Asian and Muslim communities, going beyond just offering a service to creating environments where people feel welcomed, understood, and valued.

Leaving the symposium, I felt hopeful. Change is possible, but it won’t happen without consistent engagement with our communities. Trust needs to be built, and community voices must be represented and acted upon. The gap between research and impact can be bridged if we keep pushing for culturally relevant, accessible, and respectful health services.

Plans are already in place for a follow-up symposium in November, focusing once again on the health inequalities that continue to affect SAM communities. I urge everyone to get involved. This is our chance to be part of the change and to make our voices heard in the ongoing fight for a more equitable health system. Sign-up details will be shared soon, and I hope to see more of us there - because turning these conversations into action is how we create a healthier future for all of us.

Using board games to increase inclusion in research - a trivial pursuit?

Posted by Lesley Haley, AskFuse Research Associate, Teesside University 

Did you play any board games over the holidays? As we scrabble into 2024, have you ever thought about how they could be used as a way to engage people in your research?

I hadn’t, until I went to a recent Creative Methods in Research conference, where Kath Maguire (University of Exeter/NIHR School for Public Health Research) showcased how using board games in research was anything but trivial! Kath demonstrated the concept of using board games in public involvement and engagement can increase participation by reaching people less comfortable with standard formats of engagement or data collection, such as interviews or questionnaires.

Kath brought examples, like a “pairs” game used with public partners to break down barriers of understanding around the jargon used in research. Pairing research jargon, concepts or acronyms (‘randomised control’, ‘double blinded’, ‘SPHR’, ‘NIHR’ for example) with their plain English explanations allowed all participants to probe the underlying assumptions and constructs, and perhaps to reduce the power imbalance between the knowledge giver (usually researchers) with the knowledge receiver (usually public partners). And of course this game can be used to redress that balance by public partners sharing their knowledge with researchers.

However, the most surprising game that Kath has used in increasing involvement was the repurposing of that classic multicultural game, Snakes and Ladders.

While AskFuse (the responsive research and evaluation service run by Fuse) created the pictured Snakes and Ladders game as an interactive way to explore successes (Ladders) and setbacks (Snakes) of getting research knowledge used in practice, Kath has taken the game to a whole new level.

Kath has a wealth of experience in using board games as a creative method of inclusion to reach people less comfortable with more literacy-based research methods. They bring a blank paper board and a variety of stick-on snakes and ladders as a visual prompt to generate discussion and reflection using the metaphor of the game to explore a range of experiences. The aim is not necessarily to play the game, but to use the building of a bespoke “game” to reflect and “illustrate” narratives and experiences.

Participating in Kath’s interactive workshop was, for me, a real game changer. We explored how using snakes and ladders enabled discussion, reflection and inclusion. We could design our own individual game to tell our story, or do it collaboratively. We used the game layout as a metaphor for exploring changes through time or to illustrate a “journey” (for example, exploring access or barriers to health services). It allowed us to describe and reflect on different pathways or starting points. Being a physical representation of our narrative meant that, at times, “gaps” emerged which led to questions around “what was happening here?” and “what are we missing?” The grid could also used to reflect emotional journeys in response to a given (research) question or situation. We explored how focussing on a game allowed for different viewpoints to emerge and for less vocally confident people to engage without having to “carry” a conversation or justify their experience. The game squares could be filled with comments, contributing factors, and ideas. We reflected that the snakes and ladders could be reconfigured for creative re-imagining of time/place/situations - “what would happen if we did this”? And of course the complexities of the research process can be illustrated through the metaphor of Snakes and Ladders.

At the end of the session, there was a tangible product and graphic representation of the research question, the process and the outcomes of the exploration. We reflected that over several sessions, the game would perhaps change and this progress could be captured in photos. The “game” could also then be used creatively to disseminate the research (Coon et al 2022).

We also explored the risk that a gaming method for engagement or data collection, especially in the “Snakes & Ladders” format, could be seen by some people as trivialising the serious business of research, as in the UK it is perceived as a child’s game. However the game is not all it appears. Originally known in “Moksha Patamu”, it was a philosophical game of actions and consequences for adults developed in ancient India (Museum of Gaming 2015). Over time and locality, the game has evolved into other versions, with snakes transformed into “drainpipes” or “chutes (Start the Week 2023). So the game has a tradition of being adapted and re-purposed and perhaps we should not be shy of re-purposing it to make research more accessible?

Since Kath’s workshop, I’ve had a quick look around to see if there are other researchers using gaming. While there is literature on using board games in health education and promotion (Nakao 2019) and public health policy (Spitters 2018) there seems less on the use of board games in public involvement and engagement in health.

Of course, snakes and ladders doesn’t have the monopoly on being the only board game that can be used. So, do you use board games in your research to engage with people and communities? What's been your experience of what works for who? How do you pitch it? What have you found the setbacks and successes of using board games as a creative way of engaging people and communities?

As you scrabble to fit all the board games back into the cupboard after Christmas, maybe it’s time to reflect that participatory board games in research could be for the rest of the year too, not just for Christmas.

With thanks to Kath Maguire for the interactive workshop and to SPHR for funding attendance at the conference.



References:

Coon, J.T., Orr, N., Shaw, L. et al. (2022) Bursting out of our bubble: using creative techniques to communicate within the systematic review process and beyond. Syst Rev 11, 56 https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-022-01935-2

Kath’s work:

Museum of Gaming Newsletter (2015) Issue 2 Snakes and Ladders History. Accessed 2 Jan 2024 Available at: https://www.museumofgaming.org.uk/documents/Newsletter2.pdf https://www.museumofgaming.org.uk/index.cfm

Nakao M (2019) Effects of board games on health education and promotion” board games as a promising tool for health promotion: a review of recent literature BioPsychoSocial Medicine (2019) 13:5 https://doi.org/10.1186/s13030-019-0146-3

Spitters H.P.E.M , van de Goor L.A.M, Juel Lau C, Sandu P , Eklund Karlsson L , Jansen J, van Oers J.A.M (2018) Learning from games: stakeholders’ experiences involved in local health policy Journal of Public Health | Vol. 40, Supplement 1, pp. i39–i49 | doi:10.1093/pubmed/fdx149 https://academic.oup.com/jpubhealth/article/40/suppl_1/i39/4925598

Start the Week: Playing Games (2023) BBC Radio 4 Monday 4th December 2023 09.00 Available at: https://www.bbc.co.uk/sounds/play/m001t2xq?partner=uk.co.bbc&origin=share-mobile (Accessed 8 Dec 2023)

Getting creative to make research more accessible and inclusive

Posted by Victoria Bartle, Fuse Public Partner

We were throwing balls of wool around, picking picture cards to describe ourselves and having a thoroughly inspiring time. This was not your typical research conference!

It was day one and keynote speaker Pam Burnard was encouraging us to challenge the system using creative methods to subvert common assumptions.

Many of the researchers at the International Creative Research Methods Conference in Manchester are independent, not linked to a specific university or funder and this allows them to approach research from a variety of unusual and unfamiliar angles.

The conference is the brainchild of Dr Helen Kara: independent researcher, author, teacher, speaker and creative research methods (CRM) expert. Helen’s vision was to bring together the global CRM community to share knowledge, promote understanding, enable networking and have fun!

After the first day's keynote, I went to see Nicole Brown, a researcher looking at fibromyalgia, a condition that I also have. She had asked people living with fibromyalgia to collect objects to describe how the condition made them feel. One person had taken a photo of her chair - a really comfortable armchair, with a blanket, a table beside it holding drinks, snacks and distractions. This could have been a picture of my own living room! Due to chronic pain and fatigue I have what I call my 'nest'. I have reclining sofas with a side table with all of my remotes, chargers, creams, spare meds, thermostat, drinks, snacks, book, switch, lip balm (etc.) just so that everything I need is within reach and I don’t have to move too much or cause myself too much pain. I found the picture really impactful and saw the potential for objects, artwork and abstract thinking to be able to describe conditions like fibromyalgia which is extremely difficult to explain to someone who doesn’t have it. Using objects as data to assess and evaluate was really interesting and a methodology that I wasn’t previously aware of.

We were then given the task of picking some cards to describe ourselves as researchers.

These are the lego cards I chose to describe me during the sessions by Nicole Brown, who works with objects as data in research.

The skydiver because I feel like I just ask to do things and hope for the best, the singer because I like to present and talk about PPI (Patient and Public Involvement) in research. 

Black widow because she’s a superhero and fights for people who can’t and Rocket because he’s been made up with tech and I felt like he’s a disabled superhero :)

Jargon buzzing

On day 2 the Lawnmowers Theatre Company, run by and for people with learning difficulties, brought out jargon buzzers which were amazing! The characters pressed the buzzers every time someone used a term or word that they didn’t understand. I really want to use these in PPI meetings in the future, but we might not get anything done having to explain all the acronyms and research language that is often used!

Making a 'zine'

I didn’t know anything about zines and wasn’t aware of the Madzine project to help people with mental health conditions to explain how they feel, get things out and be creative. The session was really interesting giving us some history on zines before we were able to create our own. I made one about a project that I have been working on using some paper with stars on to represent the PPI Group members. A black page for accessibility as we all had different barriers to involvement and some of them were difficult to address, hidden or unknown. Some of the zines that they showed us were amazing: creative, visual, unusual, thought provoking and touching. They plan to create a mobile Madzine library that tours around the country so that people can read the zines and share in the experiences of the creators to increase awareness and understanding of living with mental health conditions.

Board games, rockpools and podcasts  

Kath McGuire (University of Exeter/NIHR School for Public Health Research), led our session talking about working with creative methods, public involvement and research dissemination. I briefly introduced the Fuse podcast and explained the collaborative approach to creating it. People were then able to take a look around the room at the variety of creative outputs that we had brought with us, and a video about how we have creatively communicated research in Fuse (see below). We had a snakes and ladders game to be used with PPI groups, or groups of researchers to evaluate their projects: snakes were barriers and challenges and ladders were successes and wins. We also took posters created by Fuse researchers showing their project results (Emma Adams) and Kath had a Blue Health Rockpool from another project. We took questions and explained how we created the podcast, what its impact had been and answered lots of technical questions about equipment, hosting and distribution. Hopefully accurately!

Attending the conference really broadened my view of research and public involvement. Lots of researchers at the conference felt that by making their work more creative it made it more inclusive. By reducing or removing established barriers to involvement such as language, terminology, education level and academic preconceptions they were able to engage with a wider, more diverse group of people. They could still be academically rigorous and produce research that stands up to peer review and meets publication standards whilst including more people, accessing people with appropriate lived experience of their topic of study and making involvement engaging, interesting and fun!

I have come away from the conference wanting to make Patient and Public Involvement meetings more creative, use games and objects to describe feelings and opinions, implement the jargon buzzer and design engaging dissemination methods that are relevant to the target audience of the study, drawing on the skills of the researchers and PPI teams.

A special thanks to Kath Maguire, Daniel Mutanda and Heather Boult (University of Exeter/NIHR School for Public Health Research), and the Fuse colleagues: Lesley Haley, who helped me with the podcast aspect of the workshop 'market place'; Ella Anderson for preparing the workshop activity; and Mark Welford for producing the Creatively communicating research video that we used in the session.

One size fits none, watch your language, and keep pondering...

Insights from the Integrated Community Care to Promote Healthy Ageing event

Posted by Hamdi Hamzah, Research and Evaluation Coordinator with NECS Research & Evidence

It was my first time attending an event that saw people (some of us dressed in red) from across different professions – academics, healthcare professionals, voluntary, community and social enterprises (VCSE) professionals and members of the public – come together to share common interests and explore future opportunities or collaborations.

Being new to the health and social care sector and a career changer with experience working with large corporations through strategic human resource roles, the Integrated Community Care to Promote Healthy Ageing event co-hosted by Fuse introduced something that I felt was closer to what was happening on the ground, especially when research and practice interweave. From this event, I have identified seven insights that I felt were worth sharing.

But first... what exactly is Integrated Care? The NHS England website describes Integrated Care Systems as: “…partnerships of organisations that come together to plan and deliver joined up health and care services, and to improve the lives of people who live and work in their area.” They also provide a helpful video explainer.

So, on to my magnificent seven:

1. There is no “one-size fits all” approach to care

Throughout the event, this was a common theme from both presenters and attendees, who continued to stress the importance of putting individual needs at the forefront in providing care. To echo Dr Bethany Bareham (pictured right), Fuse Associate and NIHR fellow at Newcastle University through her talk on providing support to older adults with co-occurring alcohol and mental health problems, support for one individual may not be needed for someone else.

2. Similarly, there is no one way to answer a research question

The event brought together different questions, methods and groups of people to enhance our understanding of promoting healthy ageing. For example, a video presentation by Dr Vanessa Davey, a Research Associate at Newcastle University, on the feasibility of developing a data set in care homes to assist in care delivery and commissioning decisions was eye-opening. You might think that digital GP records could readily be used in one form or another to build this data set, but it is clearly not that straightforward as data from other systems, namely social care, could (and should) provide additional insights into this dataset. Most importantly, while we might take different approaches and target different populations, we are all aiming towards achieving the same goal.

3. Language can have an important effect on how we approach a question

Simply put, are we talking about the same thing? We might think that the terminologies that we are using are similar but they could mean different things to different people. For example, Dr Dan Cowie (pictured right), clinical lead with the North East and North Cumbria (NENC) Ageing Well Network (who also spoke about the Frailty iCARE platform) posed the question: are "personalised care," "personhood" and "person-centred" the same thing for the groups of people that researchers are interested in studying? How we phrase the topic we are researching could also help or hinder what we get out of our work.

4. Co-production of research through VSCE organisations

Local communities should be involved in every activity within the research lifecycle, such as research planning, analysis and dissemination, and not just during the delivery stage of the study – an opinion shared by Greta Brunskill from Voluntary Organisations' Network North East (VONNE) in one of the workshops. Patient and public involvement (PPI) is a useful platform to involve members of the public and co-produce research, but there is the risk of “professionalising” these platforms, which may lead to voices from certain communities not being heard.

5. But what about before we reach a specific age?

There was interest from the audience in exploring personal and environmental factors before someone even reaches a specific age. The idea of testing the impact of, for instance, universal basic income among young people on healthy ageing was food for thought and suggests that a lot of where we are now or – perhaps will be in the future – could depend on factors in the present such as lifestyle, socioeconomic status and access to relevant services.

6. Addressing health inequalities remains challenging

Expanding on points 4 and 5 above, health inequalities remain a hot topic in this field of work. Access to care, health literacy (a person’s ability to understand and use information to make decisions about their health), personal qualifications and involvement of underserved communities were mentioned by attendees either during the talks or workshops as challenging areas. Introducing care or support may not work if barriers to accessing care remain.

7. Keep pondering

The entire event not only provided the opportunity to know what research is being conducted but showed the tremendous volume of research questions left to be explored! One of the themes that came out of Tania Jones' workshop on maximising the use of pharmacy services was the bigger role that they may play in primary care, especially in 2026 once pharmacy graduates enter the job market with prescribing qualifications. This could in turn lead to more questions, for example, is there an inclination for pharmacists to prescribe pharmaceutical over non-pharmaceutical treatments?

While the possibilities are endless, identifying questions that are crucial and impactful may be the first step to starting a research journey and finding the right collaborators. Regardless, we should continue to think about things that we are working on, as Lesley Bainbridge (pictured right), clinical lead in the NENC Ageing Well Network, quite aptly put it, "Some of the best research questions come from what we ponder."

Images: provided with thanks to NHS NECS Research & Evidence Team

(Re)taking liberties: Reclaiming positive freedom as a public health argument

Posted by Jack Nicholls, Lecturer in Social Work at Northumbria University

At the time of writing, the government intends to lift most remaining Covid restrictions still in place in England on July 19, widely touted as 'Freedom Day'. 

I recently passed my PhD viva defending a thesis that was concerned with the diverse ways a contested value concept is understood by human welfare professionals (in my case, 'social justice' and newly-qualified social workers). As a result of that undertaking, I am now habitually critical of the ways in which ethical and moral language is used and claimed for particular agendas. In the looming shadow of so-called 'Freedom Day', I have been thinking about how caring professions and health and wellbeing researchers might reclaim the word 'freedom' for ourselves.

Possibly in contrast to many of my wonderful colleagues in the caring professions and their associated research wings, I am in broad terms a libertarian rather than a collectivist*. Individual rights and freedoms - the ability to live as one chooses unfettered without just cause, to be different, to not fit or conform - are close to sacred to me. While I can be persuaded by arguments advanced by those of a more communitarian mindset, it is always despite, rather than because, they are communitarian. When, as I will here, express concern about the speed and totality of the easing of Covid restrictions, I do so from a liberty-minded philosophical position.

The 'Freedom Day' discourse draws almost entirely on the concept of negative liberty and is emblematic of a long-established idiolect that frames freedom (with personal responsibility) in a zero-sum game against statutory entitlement to and provision of help. Negative liberty refers to the absence of constraint and control. As an idea, it is of profound importance for those of us who believe rights and freedoms are inherent to personhood, and that it is for the state to uphold them, not hand them down as bounties and favours.

Sir Isaiah Berlin 

Alongside negative liberty however sits the concept of positive liberty (both liberty concepts were set out by Sir Isaiah Berlin (pictured right) in his 1958 lecture and subsequent written works). Positive liberty refers to the idea of freedom being enabled by active action and the provision of resources, facilities and support. The two work in tandem and, for the kind of libertarian I am, they are equally important and necessary for one another. Covid restrictions have impacted both our negative and positive liberties - the former by restricting our movement, travel and association, the latter, at least for many people, by restricting our incomes, our ability to access welfare, social security, safe transport, childcare and informal support networks.

The rationale for these actions, a rationale that was broadly accepted by the majority, can be understood as a trade-off with other positive freedoms, most notably seeking to keep as many people as possible, and particularly those at most risk of developing serious or fatal Covid symptoms, free from infection. It is a trade-off I would make again in a heartbeat under similar circumstances. That is part of why the present language about 'Freedom Day' is so galling, because for many, particularly those with high-risk health conditions, their families, and those who have not yet been able to be vaccinated, July 19 will not signal any kind of freedom. I can't tell you how much I'm looking forward to my first liberated Guinness, enjoyed in the hostelry and company I choose, with all the health risks confined to the pint glass. I can't do that on July 19, because the decision has been made to prioritise the negative liberty of those of us who can enjoy it over the positive liberty of those still at particularly serious risk. We aren’t choosing freedom; we are choosing some people’s freedom over that of others.

This situation behoves health and social service practitioners and researchers to consider whether we can reclaim the concept of freedom, particularly positive freedom, as a full and proper part of our value base and lexicon. I argue that we both can and should, for what are we if not participants in endeavours for more positive freedom through greater knowledge and better health and wellbeing. Freedom 'from' is fairly hollow and useless without meaningful freedom 'to', and though many who share my philosophical persuasion see an overbearing state as a legitimate risk to freedom of all kinds, no less important is freedom from preventable illness, pain, anxiety, suffering, burden, loss of control, and the wider contributors to health inequities, not least poverty and postcode.

Our professional fields, with the best of intentions, often couch our arguments in terms of the community or public good. Without besmirching the place and value of those arguments, it is my view that were we to speak also in terms of freedom, including individual freedom, we would do so with complete intellectual coherence and legitimacy. Rather than being unjustly tagged as over-cautious and dictatorial, we could put our criticism of the end of restrictions in pro-positive freedom language. Beyond that, we could reframe and bridge the unfounded but perceived gap between individual choice and public wellbeing, all while avoiding the former being reduced to callous responsibilisation, and the latter being unfairly painted as nannying control. We might even unlock a new set of tools for persuading individuals and institutions who are rarely engaged by welfarist, collectivist or even duty of care arguments about public health concerns. We've done it before; we rarely talk about the smoking ban nowadays, rather we refer to pubs and train stations being smoke-free. Likewise fat-free, alcohol-free - it's a nice word, and an effective one.

At this moment, whatever their diverse feelings about the end of restrictions (I should caveat, the end for some) freedom is high in the public consciousness. Let us who are concerned for public wellbeing liberate our arguments and reclaim the concept of freedom, particularly positive freedom, for ourselves.

*Collectivism: a social pattern in which individuals construe themselves as parts of collectives and are primarily motivated by duties to those collectives. More here: https://plato.stanford.edu/entries/culture-cogsci

Images:

1. Courtesy of Pixabay: https://pixabay.com/illustrations/bird-cage-aviary-freedom-flying-730478

2. Sir Isaiah Berlin by Rob C. Croes (ANEFO), CC0, via Wikimedia Commons

The views expressed in posts are those of the authors and do not necessarily reflect those of Fuse (the Centre for Translational Research in Public Health) or the author's employer or organisation.

Bridging the research industry 'Valley of Death'

Posted by Peter van der Graaf, AskFuse Research Manager / Fuse Knowledge Exchange Broker, Teesside University

I was recently invited to attend a meeting in the British Library of the Bloomsbury SET. Not a group of subversive English writers, intellectuals, philosophers and artists but an Advisory Council for an innovative collaboration between four partner Colleges of the University of London. Namely, the Royal Veterinary College; London School of Hygiene and Tropical Medicine; School of Oriental and African Studies; and the London School of Economics and Political Sciences.

Death Valley, Eastern California

The partnership is funded by Research England and aims to bridge the ‘Valley of Death’: supporting research projects that get stuck between university and the market place. It does this by creating a knowledge exchange platform between the four Colleges that accelerates the delivery of innovative scientific and technical solutions in the field of infectious disease and antimicrobial resistance.

Pronouncing pathogen emergence, zoonotic disease and antimicrobial whatsit was hard enough, let alone my hope of making a meaningful contribution. I thought I would feel completely out of place as a public health researcher and the only social scientist in the room, but to my surprise I quickly discovered that the collaboration faces very similar challenges to Fuse.

For example, the project is trying to pool their commercialisation expertise across the Colleges and create a ‘single open door’ for government agencies, big pharmaceutical companies, small and medium sized enterprises, and overseas partners particularly in Africa. So, similar to our AskFuse service but with industry. In spite of their best efforts to engage researchers from the different Colleges, the project leads found that not all academics are keen to engage in partnership working outside their immediate area of expertise and that interdisciplinary partnerships, particularly with social sciences and humanities colleagues, proved challenging, as they speak a different language and have different cultures for sourcing funding.

It also proved challenging to develop trusting relationships with industry partners: academics don’t know how to find these partners and engage them in their projects, while industry partners allege that academics are ignorant of innovate technologies that have been developed in-house. This is akin to public health researchers not being aware of different types of knowledge that are being used in local government. It takes time to develop these relationships and exchange knowledge within them, for which the three-year grant funding is not long enough to show full results.

While the partnership is keen to engage with social scientists about the social aspects of the commercialisation process (e.g. work with local non-governmental organisations on engaging communities and identifying cultural and societal perceptions around vaccine use and human health), Research England is more interested in the commercialisation of ‘hard’ intellectual property through licensing or spin-out. Hence, the key performance indicators are all skewed towards these outputs. In other words, the incentive structure set by the funder is not encouraging the very thing that the partnership is trying to achieve. This sounds very similar to the lack of incentives and career opportunities within universities for engaging in knowledge exchange in public health.

Group photo (me, furthest right)

During the meeting, the need for creating an infrastructure within the Bloomsbury SET that can facilitate conversations between academics across the Colleges and broker relationships with industry partners was acknowledged by the Advisory Council members. Dedicated funding to develop collaborative proposals between industry partners and academic researchers that address this need was suggested as a useful knowledge transfer mechanism. Similar to the Public Health Practice Evaluation Scheme (PHPES) operated within the NIHR School for Public Health Research.

In summary, even if you don’t have any expertise in a particular scientific field (and can’t even pronounce their topics), chances are that you have more in common and face similar struggles when moving research findings outside academic institutions, whether that involves industry or policy and practice partners. The Colleges study transmittable diseases from animals to humans but to have impact with their research equal attention is needed to the transmission of knowledge from one human sector/ academic discipline to another.

Struggling to see a way through your data? Try a different lens

Posted by Peter van der Graaf, AskFuse Research Manager / Fuse Knowledge Exchange Broker, Teesside University

“Having trouble analysing your qualitative data? Are you lost in the sheer amount of data you have collected and don’t know where to start?”

This was the strapline of a course at Kings College London last week, called ‘Ethnography Language and Communication’ and a big reason why I attend the summer school. Within my NIHR Fellowship research, I have collected big piles of observation notes, interview transcripts and meeting minutes and struggled to make sense of them. So did the course deliver?

Over five days, we were presented with a range of analytical tools borrowed from linguistics and applied to qualitative data (interview transcripts and video recording of job interviews and classrooms) with an ethnographic lens. In essence, this means trying to understand how meaning is constructed in social interactions by studying text and recordings generated from these interactions in fine detail. First from the perspective of the specific situation in which these texts were constructed, but with an explicit aim to make valid statements about the wider social structures in which these interactions are embedded.

The course leaders* have even come up with a name for this academic discipline: ‘linguistic ethnography’. Linguistic ethnographers acknowledge that texts are representations of social actions and, therefore, that to understand these texts you need to closely investigate the social interactions that produced them.

However, they also explore how these interactions are embedded in institutional contexts and are closely linked to social interactions elsewhere, both in time and location, adding a historic and place perspective. Sociological concepts of power, social class, inequality and identity feature eventually in these analyses but are not presumed and not used in the first instance. The specific context of the social interaction is initially key for understanding what is going on.

The course attracted speakers and participants from across the globe, including the UK, US, China, Spain, Germany, Austria, Belgium, Turkey, Israel and many more. This international gathering aligned nicely with the aims of the course: being highly interactional, working across different contexts with different types of data and approaches coming together to co-create a better understanding of their data.

Although we discussed many theoretical concepts, the course was also practical and gave us the opportunity to experiment with a range of analytical tools (or what Ben Rampton preferred to call ‘sensitizing concepts’): from micro-analysis (a form of Goffmanian conversation analysis: applying a dramaturgical lens (life is a stage!) to data interpretation) to discourse genres featuring The X Factor, multi-modal analysis (looking simultaneously at different modes of communication such as language, gaze and gestures), semiotic landscapes (e.g. how shop signs in neighbourhoods communicate change) and trans-contextual analysis (how text moves and changes across contexts and interactions). If you are confused by the plethora of terms and concepts, you feel exactly as we did during the course!

However, this was also the point: gaining experience of applying a range of tools that overlap or sometimes contrast with our data to find new insights that we wouldn’t otherwise have discovered. If it is helpful, use it; if not, try another tool or a combination of tools. In this sense, the course was very pragmatic. And this also applies to the role of being a linguistic ethnographer. You do not need to do X, Y and Z as a minimum, with a potential dusting of C to call yourself a linguistic ethnographer. Instead, you prescribe to a set of principles about the nature (social interaction), context (multi situational) and structure (institutional framing) of texts and recordings, that help you to choose from and apply an analytical toolkit.

Applying a different lens

Did it help me make more sense of the qualitative data I collected for my research project? No (at least not yet), but the course provided me with a starting point for analysis. It also helped me realise that trying to incorporate and do justice to all the data that I collected is simply not possible. Instead, applying a linguistic ethnographic lens to my data will help me to identify instances of text that signify social interactions that are critical for my understanding. This will ultimately help me to build an argumentative structure for my papers.

I will still need to go through all my qualitative data in detail but have a better sense of how to navigate this now.


*Ben Rampton, Kings College London; Adam Lefstein, Ben-Gurion University of the Negev; Jan Blommaert, University of Tilburg; Jeff Bezemer, University College London; and Julia Snell, University of Leeds

Why we must stop using the F-word in relation to Gypsies & Travellers

Posted by Natalie Forster, Senior Research Assistant at Northumbria University and Fuse, and Helen Jones, CEO, Leeds Gypsy and Traveller Exchange

Fascination. Not the word you expected? Then read on to find out why we find it so problematic when people say they are ‘fascinated by’ Gypsy and Traveller Communities.

We frequently hear ‘fascination’ cited as a motivation for
 working with Traveller Communities by practitioners

There is certainly a captivation with Traveller Community ‘lifestyles’ in society. The numerous Gypsy and Traveller autobiographies and television programmes devoted to Traveller Communities (perhaps best exemplified by the Channel 4 ‘Big Fat Gypsy Weddings’ phenomenon) have led Gypsy and Traveller life to be described as a ‘bestseller’, with little sign that this interest is fading. Television programmes are often badged as an exposé on Traveller Community lives, starting with the premise that Traveller Communities are hidden, closed-off and exotic. The Channel 4 Big Fat Gypsy Weddings series for example, promises a ‘Revealing documentary series that offers a window into the secretive, extravagant and surprising world of Gypsies and Travellers in Britain today’ (emphasis added). This language is not value free, and seems to foster a sense of intrigue or fascination in order to appeal to viewers.

Traveller Community members have a lack of opportunities to shape their own image in popular culture. A complete absence of Gypsies or Travellers among the proposed cast for an upcoming BBC Film adaption of Mikey Walsh’s memoir ‘Gypsy Boy’ recently drew attention to the exclusion of Traveller Community voices in the film industry. The understandable reluctance of many Gypsy and Traveller Community members to disclose their ethnicity for fear of racism and discrimination also means there are a lack of images or stories to counter the negative stereotypes peddled within mainstream media. That said, younger Traveller Community activists in particular are increasingly making use of forums through which they can challenge these portrayals.

What though are the implications of this issue for health practitioners, researchers and the public? Of course, we recognise that many of our colleagues share our aversion to programmes such as Big Fat Gypsy Weddings and the hugely problematic representations of communities that these advance. Yet, the underpinning premise of these shows remain unchallenged by many, and we frequently hear ‘fascination’ cited as a motivation for working with Traveller Communities by practitioners.

Why do we feel uncomfortable when someone says they are ‘fascinated by’ Traveller Communities? The use of ‘fascination’ echoes the voyeuristic sentiment of many television programmes and reinforces notions of Traveller Community members as exotic and worthy of special attention or interest. When mentioning working with Traveller Communities, the very reference to these groups often appears to prompt greater interest, but why should this be the case?

It is problematic, we think, in its divisiveness; in the impression it gives of Traveller Communities as mysterious and ‘other’, and a community that ‘outsiders’ can only look into. This downplays the possibilities for seeing commonalities between Traveller Communities and other sections of society – Gypsies and Travellers are seen less as people ‘like us’, facing similar experiences or challenges in life, and more as groups we should find out ‘about’ or gather information ‘on’.

A sense of fascination also seems to shift the motivation away from the interests of Gypsy and Traveller Communities themselves, and towards fulfilling the agenda of those working with these groups. A desire to satisfy one’s own curiosity about Traveller Communities can result in questions that are insensitive, such as those about the cost of someone’s caravan, or aspects of culture that are unconnected with the purpose of a visit.

It is for these reasons that we call for the reconsideration of the use of ‘fascination’ in relation to Traveller Communities and other groups who are seldom heard, as well as for greater questioning of the assumptions that lie behind this term, and the interests it truly serves.

Image: "Seeing My World Through a Keyhole" (4592429363_292aec80c9_z) by Kate Ter Haar via Flickr.com, copyright © 2010: https://www.flickr.com/photos/katerha/4592429363