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(Lorraine Lawrence) On Tuesday 16th December 2025, I (Lorraine Lawrence) made my way down to the very aptly named CityLabs building on Oxford Road, Manchester. For those unfamiliar, CityLabs is a hub of innovation and research, a place where science and collaboration intersect in a dynamic and inspiring environment. Walking into the building, I was immediately struck by the modern architecture, bright open spaces, and the energetic buzz of people working together. It felt like the perfect setting for the purpose of my visit that day: meeting with one of my PPI (Patient and Public Involvement) members to catch up and discuss the next steps in our collaborative work. Setting the Scene: CityLabs as a Research Hub CityLabs is more than just an office building; it’s a symbol of modern research and innovation. The design itself fosters collaboration, with open-plan workspaces, communal areas, and plenty of natural light. There’s a sense of momentum here, a feeling that ideas are constantly being generated, shared, and tested. As someone deeply involved in health research and patient engagement, this environment always feels energising. Meeting my PPI member in this setting was particularly fitting. Our work together centres  patient perspectives, lived experience, and real-world insights. CityLabs, with its focus on research and innovation, provided the perfect backdrop for our discussion. The aim of the meeting was clear: to provide updates on the work I am currently undertaking and, importantly, to plan a reflective paper that I will be co-writing with my PPI  partner,  exploring their lived experience of COPD (Chronic Obstructive Pulmonary Disease). (Pic of Citylabs offices) Understanding the Importance of PPI Involving PPI members in research is about more than just gathering feedback :  it’s about listening, learning, and co-creating knowledge. In my work, I have seen firsthand how PPI contributions can profoundly influence hea lth and care research. The perspectives of those living with a condition like COPD are invaluable, as they provide insights that cannot be captured through statistics or clinical observations alone. Their lived experience highlights challenges, coping strategies, and nuances that enrich our understanding and make research more grounded. The Meeting: Conversations That Matter (Wilson Boardroom) Franklin, who is a valued member of the Caribbean PPI Group, contributed his insights as a local community resident deeply engaged in health research. Having previously interviewed him for the UPTURN codesign work package, it was fantastic to continue the conversation and explore how the project can reflect lived experiences while addressing health inequalities. When I met Franklin , we started the session with some informal conversation, catching up on life outside of research. These moments are important :  they build trust and rapport, which are essential for meaningful collaboration. Once we settled into our discussion, we focused on the purpose of the meeting  and I   updated  him on the progress of my work and discussed  how we would approach the reflective paper on his COPD experience. (Wilson Boardroom) During our conversation we talked about his personal journey living with COPD, including the everyday challenges he faces, and the strategies he has developed to manage his condition. Despite the limitations associated with COPD, Franklin highlighted that he does not allow the condition to define or restrict him. His resilience carries him through the daily challenges and he continues to engage in activities he enjoys and to adapt his routines in ways that support his quality of life. He described a range of practical, self-directed strategies developed through lived experience and sustained determination, including maintaining regular walking to support his physical fitness, engaging in gardening as a manageable and meaningful form of activity, and continuing to travel by carefully planning around his health needs. These practices reflect an active approach to self-management and illustrate how everyday activities can be adapted to support wellbeing while living with COPD. I also shared updates on my current work, outlining recent developments and future directions. This exchange of information is critical in maintaining a collaborative dynamic and ensuring that PPI members feel informed and valued. The Power of Stor ies  and Lived Experience Designed by Freepik One of the most compelling aspects of this work is the opportunity to engage with real stories. Storytelling and illness narratives in health research are  powerful tools .   They  bridge the gap between clinical data and daily  experience. By capturing the highs, lows , coping strategies, and emotional journeys of people with lived experience , researchers can develop a more holistic understanding of health conditions and their impact on daily life. As I listened to Franklin , I was reminded of the responsibility that comes with documenting someone’s personal  experience. The goal is to accurately represent his story while highlighting broader themes that can inform healthcare practice. The reflective paper we are working on together   will not only document his journey but also serve as a resource for healthcare professionals, caregivers, and other patients navigating similar challenges.   A Community Connection: Moss Side Christmas Event Following the CityLabs visit, I also attended a community event at the West Indian Sports and Social Club, organised by another  PPI member from my community-specific PPI Group for Caribbean communities , Mr Anthony Wright  - or as I like to call him, ‘Mr Manchester’. The annual Christmas meal brings together young and old from across the community, fostering connection and celebration in the heart of Moss Side. (Event flyer) What made the event particularly special was the sense of nostalgia. I reconnected with people I hadn’t seen in years, taking me straight back to childhood holidays spent with my aunty and cousins. Even though the event was informal, the warmth of the community was immediate. True to Manchester spirit, several people noticed I had arrived alone to support Tony and welcomed me warmly. We discussed the UPTURN project, and there was genuine interest in Black health and inequalities . These conversations highlighted the importance of community-informed research and the need to address long-standing disparities through approaches that centre lived experience, trust, and meaningful engagement. Once again, a wave of nostalgia washed over me that afternoon. I recognised a woman whose face was familiar, though I couldn’t immediately place where I knew her from. When I asked, she told me she works at Boots pharmacy in the city centre and suddenly it clicked. I remembered her from years ago, when I was still a student. Realising that nearly 25 years had passed since then was a quietly powerful moment, reminding me how community spaces hold shared histories and allow past and present to meet in the most unexpected, grounding ways. No Caribbean event would be complete without food. The meal was fantastic, served with care by Tony and a team of volunteers whose commitment and community spirit were evident throughout the event. The afternoon brought several strands together: collaboration with two of my PPI members, progress on a reflective paper co-written with one of them, and renewed engagement with the local community. Having lived in Manchester for 18 years, this sense of continuity and connection was particularly striking.   (Anthony Wright, PPI Member) Looking Ahead: The Reflective Paper (Photo by Mikhail Nilov - Pexels) Following our meeting, the next steps are much clearer to me now. Together we will co- author  a reflective paper that centers Franklin’s  lived experience of COPD. This paper will explore the nuances of living with a chronic condition, the strategies used to manage symptoms, and the personal insights gained along the way. Conclusion Tuesday 16th December was more than a simple meeting; it was a day of meaningful connection, reflection, and collaboration. CityLabs provided the perfect setting for this encounter, a space that embodies innovation and research excellence. The conversation with Franklin reminded me of the importance of patient involvement, the value of lived experience, and the power of narrative  in health research. As we move forward with the reflective paper, I carry with me the insights shared, the lessons learned, and a renewed commitment to amplifying patient voices. This work is not just academic, it is human, and it is essential. By documenting lived experiences, we can foster understanding, inspire change, and contribute to a healthcare landscape that is compassionate, informed, and patient centred. For more information visit: Citylabs: https://bruntwood.co.uk/our-locations/manchester/citylabs/?utm_source=google&utm_medium=organic&utm_campaign=google-LPM-citylabs-10 West Indian Sports & Social Club: https://loadstodo.co.uk/venue/west-indian-sports-social-club/ Author: Lorraine Lawrence Community Researcher (UPTURN) Department of Health Science, University of York

Event flyer The night before this community health event, on 14th November 2025, Manchester had been battered by what felt like the storm of all storms, and I (Lorraine Lawrence) found myself wondering whether the planned event would even go ahead. By the morning, the storm had thankfully calmed, giving a small sense of relief, although the wind was still blowing and the rain lingered. Even though I travelled by cab, due to tram lines being affected by fallen branches, the journey was still an adventure. From inside the cab, I witnessed scattered debris along the streets and couldn’t help but notice the chaos the storm had caused. I counted 11 broken umbrellas along the way in a 25-minute journey, a stark reminder of the storm’s intensity. Undeterred, I pressed on in true Mancunian fashion, determined to make it to the Moss Side Millennium Powerhouse. To my delight, the moment I stepped through the doors, the atmosphere transformed completely. The Powerhouse was alive with warmth, positivity, and a real sense of purpose. The contrast between the weather outside and the energy inside was remarkable. Residents, families, young, old, and local organisations had all made it through the weather, showing the true resilience, dedication, and spirit of Manchester. Lorraine Lawrence Upon arriving at the venue, I was greeted by staff who asked for my name and the organisation I represented before guiding me to my table. The stall covered in a bright yellow cloth and decorated with the ‘Powerhouse’ logo and Manchester’s iconic worker bee, immediately felt welcoming. Coincidentally, yellow is my birth colour, so the setup felt especially fitting for the day. I chose to attend the event because it focused on community health and wellbeing, making it an excellent opportunity to showcase the UPTURN project to residents and partner organisations. Having a stall there was a natural choice, allowing me not only to raise awareness of the project but also to engage directly with the communities  and gain a clearer understanding of their health needs. Once everything was set up, people began approaching the table with genuine curiosity, asking thoughtful questions about UPTURN, the communities we work with, and the initiatives we have planned. Many conversations also opened up broader discussions about health, particularly smoking within ethnic communities and the difficulties some groups face in maintaining good lung health. These exchanges were incredibly valuable, providing meaningful insight into community concerns while encouraging residents to reflect on ways they can improve their wellbeing.   Lorraine Lawrence & Afzal Khan, MBE One of the unexpected joys of the day was reconnecting with people I’ve had the pleasure of working with in previous roles. It’s always heart-warming to see familiar faces, and one of those was Afzal Khan, MBE. Catching up felt like a real blast from the past, a reminder of the strong relationships and shared community values that continue to shape my journey. As the event ended and I stepped back outside into the calm after the storm, I felt uplifted, inspired, and deeply grateful. Days like this are a powerful reminder of why community work matters so much. The resilience and positivity of residents, the dedication and creativity of partner organisations, and the shared commitment to improving wellbeing, even in challenging conditions, reflect the true strength, spirit, and heart of South Manchester. Moss Side Millennium Powerhouse A special acknowledgement goes to the Neighbourhood Health Champions , who played a central role in making the event both meaningful and accessible. Their tireless dedication to improving local health outcomes not only strengthens community connections but also empowers residents to take an active role in their own wellbeing. Seeing their commitment in action reminded me of the profound impact local champions have in fostering a healthier, more connected community. I left the day with renewed energy and optimism, looking forward to continuing these conversations and nurturing these partnerships. To learn more about the organisations mentioned, please visit: Moss Side Powerhouse   https://msmpowerhouse.org.uk/ Manchester Local Care Organisation https://www.manchesterlco.org/neighbourhood-health-champions/ Author: Lorraine Lawrence Community Researcher (UPTURN) Department of Health Science, University of York

On Thursday 23rd October 2025, I (Lorraine Lawrence) had the wonderful opportunity to attend a Black History Month Celebration at the Rainbow Community Centre in Manchester as part of my ongoing community engagement work. The event was a heartfelt gathering that honoured the enduring legacy and vibrant contributions of the African and Caribbean diaspora to life in Manchester. If you’d like to learn more about this inspiring organisation and the incredible work they do in the community, visit Rainbow Community Centre .  A true Manchester welcome Event Programme From the moment I arrived, the atmosphere was buzzing. It was a full house filled with warmth, laughter, and the unmistakable aroma of home-cooked food. The room radiated the vibrant energy and spirit that makes Manchester’s community so special, with people greeting each other like old friends and children’s laughter buzzing through the crowd. In true Caribbean and African fashion, the evening began with what we all know best: a plate of delicious, soul-satisfying food. A huge thank you goes to Chef Juliette, one of our dedicated PPI group members, whose culinary talents shone throughout the evening. Every dish was bursting with flavour, love, and care, from the perfectly spiced vegan curry, and the rich, colourful sides. The food didn’t just satisfy our appetites it brought people together, sparking conversations and smiles at every table and chair. With bellies full and plates emptied, everyone was ready for a night of culture, connection, and joy. The atmosphere was alive with anticipation, the kind that promises an evening of celebration, storytelling, and shared heritage that will be remembered long after the drums have stopped beating.   Picture of the Event Attendees   Honouring Culture, creativity, and community Picture of Lesmond (left) and Lorraine (right) The event was officially opened by Lesmond Taylor, one of the organisers and another member of the UPTURN Caribbean PPI group. It was wonderful to reconnect with Lesmond, who I’ve had the pleasure of working with before. His warm welcome and infectious enthusiasm perfectly captured the spirit of the evening. The evening’s programme was beautifully curated: a showcase of creativity and pride that reflected the strength and unity within Manchester’s African and Caribbean communities. Guests were treated to live performances, spoken word poetry, a percussion orchestra, and even a few fun games and quizzes that had everyone engaged and smiling. Each moment celebrated our shared heritage and the powerful contributions of those who came before us, paving the way for generations to come.    Inspiring reflections from Professor Washington Alcott Prof Washington Alcott The evening concluded with a deeply moving address by Professor Washington Alcott, a respected historical researcher, educator, and community historian. He is widely recognised for his work in uncovering and sharing the often-overlooked histories of the African and Caribbean presence in Britain, from the early arrivals of African scholars and seafarers to the lasting influence of Caribbean migration on culture, education, and civic life. Professor Alcott spoke passionately about the importance of telling our own stories, ensuring that the contributions and experiences of Black communities are recognised not just during Black History Month, but throughout the year. He highlighted how these histories are embedded in British society in music, art, education, and activism and emphasised that celebrating them is both a tribute and a responsibility. He also encouraged the audience to consider how we can continue this work: educating future generations, supporting cultural initiatives, and keeping these narratives alive through storytelling and community engagement. His words were both inspiring and thought-provoking, leaving a lasting impression on everyone present. Ultimately, Professor Alcott reminded us that understanding our past is essential to building a more inclusive and empowered future: a message that perfectly captured the spirit of the evening.   Closing reflections Lorraine and the winning team As the evening ended, I left the Rainbow Community Centre feeling uplifted, inspired, and deeply proud. The celebration was a beautiful reminder of our shared heritage and the strength that comes from unity and community spirit. Attending events like this also reinforces the heart of my work with the UPTURN community engagement and PPI initiatives. These events offer genuine opportunities to connect with people beyond formal meetings or surveys, allowing for meaningful conversations that shape how projects evolve and respond to real community needs. Building trust and long-term relationships through shared experiences is vital it ensures that voices from all backgrounds are not only heard but actively influence decisions. Each event strengthens the collaborative bonds that underpin our work, reminding me that true engagement is about partnership, respect, and ongoing dialogue that continues well beyond a single evening of celebration. My sincere thanks go to all the organisers, volunteers, and community members who worked so hard to make the event such a success. Your dedication, creativity, and warmth shone through in every detail from the thoughtful planning to the joyful atmosphere that filled the room. Author: Lorraine Lawrence Community Researcher (UPTURN) Department of Health Science, University of York

On Saturday 27 th  September 2025 at 8pm, in a bright hall at St. Theresa’s Catholic School in Sheffield, I (Ada Achinanya) stood up for a brief slot at the Igbo community’s monthly meeting. The Igbo community is one of Africa’s largest ethnic groups from Nigeria. The Igbo community in Sheffield is a lively, intergenerational network of families, professionals, and elders who gather monthly to celebrate their culture, share practical support, and keep language and traditions alive. The monthly meetings double as both a social anchor and a problem-solving forum. Weddings, festivals, burials and naming ceremonies get planned alongside health talks, youth mentoring, and mutual aid. It’s a space where newcomers find footing and old-timers sustain connection. Event Flyer I’d prepared a brief talk about COPD, including slides, stats, and the usual scaffolding. But looking out across the room, families in weekend clothes, aunties balancing paper plates, kids restlessly running around their parents, it felt wrong to “present at” these people. I closed the laptop and asked a different starter: “Have you ever had a situation where your lungs have demanded your attention?... Anyone?” Fortunately, it turned out to be the right question! A few minutes melted into a twenty-minute conversation, generous, warm, and bracingly honest, because lung health is never just lungs. It’s childhood, weather, work, migration, fear, and the clever ways we adapt. Picture of youth playing football in Nigeria A man near the front went first. He smiled as he recalled a memory from his rural village in southeastern Nigeria, where the ground runs red with iron-rich sand. As a boy, he’d play football barefoot on that warm, powdery pitch until sunset. Then came the asthma diagnosis. The inhaler solved one problem but created another: football on sand now triggered tightness in his chest and wheezing. Imagine being a ten-year-old boy and learning that the very ground of your childhood evening football kickabouts had turned into a hazard sign. He said it matter-of-factly, but I could hear the loss in his voice. Health guidelines will tell you to “avoid triggers”. They rarely tell you that triggers can be tied to joy.  Another man described hustling through odd jobs to survive, back home in Nigeria. He worked on a construction site, where “ carrying cement ” wasn’t just about lifting bags. It was tearing them open, emptying the powder, mixing it by hand with sand and water. Cement dust is not gentle. He developed tight, gritty breaths and eventually needed an inhaler. Then he said something I’ve heard in different forms but never tire of thinking about: “Since coming to the UK almost eighteen years ago, I haven’t needed the inhaler .” He, however, doesn’t test his luck, no runs, no football, or anything like that, but he has golf now. Long walks instead of sprints. He adjusted the activity, the pace, the air. We talk a lot in research about “environmental exposures,” but that phrase can sound clinical. In his story, ‘environment’ meant both cement dust and a fairway at dusk. It meant choosing a sport that lets you stay in conversation with your lungs, not at war with them. A mother spoke next, and the room leaned in. She said that her baby, when crying, would sometimes hold his breath until his tiny face and lips turned blue. The first time it happened, she felt terror. She rushed to A&E, where she was told, accurately, if not comfortingly, that some babies do this. She went home with information and adrenaline, but still no peace of mind. So, she said she was told about and bought a device called an ‘Owlet’ to track her baby’s respiratory rate at night, which had an app that monitored everything on her phone. “Even though it was so expensive, it gave me peace of mind and helped me sleep at night,” she said. Monitoring by the doctors didn’t cure anything, but this gave her a bridge back to ordinary life. As health researchers, we often frame devices as clinical tools. For parents, they are often emotional prosthetics, ways to keep the heart from living at 180 beats per minute. As people talked, I found myself shifting my mental slides from ‘COPD’ to ‘lung health’ and then, further still, to breathing as biography. In research, we like neat categories: COPD vs. asthma, environmental vs. behavioural, risk vs. resilience. But none of the stories that evening obeyed a single box. The red sand of a village pitch is an environmental exposure. It’s also a childhood friend. Cement dust is an occupational hazard. It’s also a line item on the ledger of survival. A baby’s breath-holding spells are a paediatric phenomenon, but they’re also a mother’s midnight vigil and an app’s alarm. We also talked about what changes when people move. Migration rearranges the air you breathe, literally and figuratively. New climates, different particulate loads, unfamiliar pollens. New jobs, new leisure, new anxieties, new health systems. For one man, relocation loosened the grip of his inhaler; for another, it changed where and how he could move his body without fear of discomfort. This matters for research design. If we recruit participants without asking about their past and present, we miss the connective tissue of their story. And if we measure outcomes without asking what activities they value, we risk “improving” the numbers while shrinking their lives. There was a moment, half laughter, half complaint, about how public health advice can feel like a constant “no”: no dust, no exertion, no allergens, no smoke, no fun. Fair point. We owe communities guidance that says “yes” more often: yes, to swaps that protect their lungs without stripping their joy; yes, to environments that make healthy choices default; yes, to sports that invite pacing, pauses, and regular breathing. Golf, as that man suggested, is one answer. Others suggested that walking is another easy option, and another said singing in a choir also counts for them, because it promotes breathing regulation and encourages social interactions. (I didn’t lecture; I just listened, because this was not the night for that, but it’s the homework I took back to my desk.) Picture of the chairman calling the discussion to an end Somewhere around minute twenty, the chairman glanced at the clock. The porters needed to close the hall. We could have talked for another hour, easily, about second-hand smoke, cultural beliefs around wheezing, the long wait for diagnostic clarity back home, the TikTok doctors, and the small hacks families invent to get through winter when they’ve relocated. But meetings run on both curiosity and courtesy, and we were already pressing on the latter. We wrapped up with food and drinks. The secretary asked about the dues to be paid, and receipts were pocketed, while the hum of conversations that always seem to get richer precisely when the formal agenda ends continued. Several people came up to me afterwards to continue the conversation, some with questions, while others shared stories that didn’t quite fit the topic but were equally interesting to hear. Those subtle minutes are where trust grows: no slides, no acronyms, just humans comparing notes on how to keep air moving in and out their lungs. On the way home, I thought about what it means to “engage” as a researcher in this setting. It’s easy to celebrate discussion because it feels good (and it did). But the real test is whether the stories change how we work. Here is what I felt the evening demanded of me: Start with lived experience, not labels. If I say “COPD,” but you say, “dust on the football field,” the work is to braid those two truths, not to replace one with the other. Measure what matters. Spirometry and other tests like it are important, but so is whether you can walk the length of a golf course without fear. Design for “yes.” When advice removes joy, people abandon it. When it preserves or relocates joy, it tends to stick. Name environments. Ask about the red sand, the cement, and the British winter. Ask about the choir, the mosque, or the bus route. Return the favour. Communities lend us their stories; we owe them feedback and fixes, not just findings. Dr. Ada Achinanya in front of St. Theresa’s Catholic School I arrived with a talk about COPD and left with a sharper map of lung health that stretches from village football pitches to construction sites to city green golf courses. The evening reminded me that we don’t breathe in isolation. Every breath is social, historical, and personal. Research should be, too.   But if there’s one thing that night taught me, it’s this: when we let people talk about their lungs, they point us toward solutions we can actually live with. Author Dr. Ada Achinanya

I am Lorraine Lawrence, one of the  EDI Workstream researchers on the UPTURN project. Capacity building and training is a key objective of our work. As part of this, I attended the Creative Tools and AI Training Series , which took place over 3 weeks from May to June 2025. These sessions gave me fresh ways to think about sharing research more effectively, blending creativity, strategy, and technology. Over the course of several workshops, I explored practical approaches to storytelling, marketing, and the use of AI to enhance communication and visibility. Designed by Freepik The series began with the ‘Creative Tools Workshop,’ which highlighted the power of video as a storytelling medium. I learned how to structure research into accessible narratives, plan production realistically, and consider how to reach wider audiences through social media, institutional websites, and public events. I came away with the understanding that video is not just about visuals, it’s about creating connections through compelling stories. The next session, ‘Marketing Tools for Academics,’ focused on how researchers can build a personal or project brand and increase visibility. With limited time and resources in mind, I was introduced to low-cost digital tools such as Canva and Gamma, along with practical strategies for tailoring messages to different audiences, whether peers, policymakers, funders, or the public. Designed by Freepik The series also included two AI-focused sessions, which showed me the role generative AI can play in supporting research communication and development. The first demonstrated how AI can assist with brainstorming research questions, summarising literature, and creating presentations. The second explored more creative applications, such as simplifying complex ideas, repurposing research into blogs or infographics, and streamlining outreach across multiple platforms. What stood out most for me were the hands-on demonstrations and interactive exercises. These helped translate theory into practice, whether through crisis communication role-plays, conflict resolution workshops, or feedback delivery exercises. They gave me tools I could apply immediately in real professional settings. Designed by Freepik By the end of the series, I felt more confident and clearer in my approach to communication, with practical strategies to maximise the reach and impact of our research. Most importantly, I saw how storytelling, marketing, and AI tools can transform the way research is shared, by making it more engaging, accessible, and meaningful to diverse audiences. For a full overview of the training, please visit the YouTube link below. Don’t miss this opportunity to gain additional insights that complement the material shared in this blog. Author: Lorraine Lawrence Community Researcher (UPTURN) Department of Health Science, University of York

On the 2 nd  of August 2025, the Igbo Union South Yorkshire, a 300-strong community, gathered in Sheffield to celebrate ‘IRI-JI’, the New Yam Festival.    IRI-JI marks harvest and thanksgiving. Even in diaspora, it anchors the calendar, identity, and intergenerational teaching of the Igbo community and its people. If you’re studying community resilience, start here: the festival serves as both a ritual and a social infrastructure. I (Ada Achinanya) came to the Iri-Ji as both participant and researcher/note-taker: feet in the drum circle, pen in the margins. This blog post braids the day’s rituals, which include the kolanut blessing, the first cut of yam, the dances, the masquerade, with the quiet lessons they teach about kinship, consent, youth mentorship, foodways, and civic belonging in diaspora. You’ll see the celebration exactly as it unfolded to me, and alongside it, my brief ‘researcher tips’ drawn from conversations, observation, and cultural protocols (always with permission, always with reciprocity in mind). My aim for this blog is simple: to honour the festival’s heartbeat while offering practical insights for anyone seeking to engage this community respectfully, so the scholarship deepens the relationship, not the other way around. Invitation Flyer The Doorway of the Kola-Nut (Iwa-Oji) I arrived to the sound of drums that felt like a heartbeat you could walk to. You could taste celebration in the air: pepper and palm oil, dust and laughter, a chorus of greetings that made strangers feel like cousins. It was one of those days that makes living in the ‘diaspora’ feel less like distance and more like a bridge. We began with ‘Iwa-Oji’, the kola-nut blessing. Elders lifted the nut like a small sun, speaking prayers that braided memory with hope, honouring ancestors, asking God for health, unity, and good harvests (in the UK, that means good work, good grades, and yes, sometimes actual allotment yams). When onye isi oji  (kola leader), split the kolanut, the room breathed out together, with a resounding ‘ise’  (meaning, Amen). Tips for researchers : When you arrive, greet elders first. Learn a few: Nnoo/Nnọọ (welcome), Kedu?  (How are you?). Observe the kola-nut ritual before interviews or photo-taking; it’s the community’s “opening ceremony” for the day’s social contract. Ask who the onye isi oji  (kola leader) is and request permission before recording. However, also remember that consent is layered; event permission ≠ personal consent. The First Slice of Plenty (Iwa-Ji) Next came ‘Iwa-Ji’, the ceremonial breaking of the new yam. The yam, stout, earthy, defiant, was lifted, blessed. The knife’s gentle press, the careful reveal, soft, white, steaming, sent a ripple of approval through the room. We clapped not merely for a tuber, but for survival, for harvests past and future, for the stubborn joy of a people who have weathered more than most and still insist on thanksgiving. Children pressed forward, eyes wide. An elder whispered to them that yams are the “king of crops,” a lesson about labour, land, and pride wrapped in a snack-sized metaphor. Tips for researchers : Iwa-Ji symbolises productivity and gratitude. If you’re documenting foodways, note that yam is also a character in Igbo storytelling, not just a crop. Capture the language used around it: ji , nri ji , onye oru  (a hardworking person). Masks, Muscles, and Motion The programme swung from solemn to ecstatic and back again. ‘Igbá Mgba’ (traditional wrestling) drew a ring of cheers and laughter. A circle opened, and two wrestlers faced off, sinew against sinew; the crowd punctuated each grip with shouts of counsel and delight. It’s sport, yes, but it’s also a masterclass in respect and controlled strength. Next, the ‘Agaba’ Masquerade swept in with a gust of mystery, raffia rustling, colours flashing, a presence that felt half-theatre, half-thunder. Children squealed and then leaned closer, the way we all do when fear and fascination hold hands. The ‘Atilogwu’ youth dancers were all electric, executing airborne flips and precise footwork, followed swiftly by the ‘Umu-oji’ women’s dance, which offered a counterpoint: grace, elegance, wrists and storytelling waists drawing cursive patterns in the air, following the beats of the drums. Tips for researchers : Masquerades (called mmanwụ ) occupy sacred-performative spaces; not all are suitable for casual filming. Always ask an organiser whether a specific troupe (e.g., masquerade, dancers) permits recording and clarify how the footage will be used. Offer to share copies with the group’s archive. What We Wore, What We Said Without Speaking The hall shimmered. Everywhere I looked, people wore their native attire. Women paired blouses with two wrappers knotted at the waist, and headscarves (called ichafu ) tied like crowns that knew their worth, all carrying stories on their hems. Men turned up in ‘isi-agu’ (lion-head) tops, wrappers or trousers, and red/black caps on tilted heads. Beads clicked softly, portable history in coral and brass. Tips for researchers :  In your dressing, business casual is fine, and when addressing people, use titles when introduced: Chief , Nze , Lolo , Sir/Madam . Compliment outfits and ask the story of a cloth’s motif or a bead set; attire often signals hometown, lineage, or title. If you photograph people, offer to airdrop or email the shots, and reciprocity builds trust. Eating what we celebrate The food,      OMG      the food! The food table was a constellation. Platters seemed to multiply. Bowls of abacha with fish (that tangy, irresistible Igbo salad) sat beside coleslaw (because diaspora is fusion). ‘Onugbu’ (bitter leaf soup) and egusi anchored the table, thick and fragrant, ready for every kind of swallow. There was rice with vegetable sauce, moi-moi, fried plantain, and a battalion of snacks, puff-puff, chin-chin, meat pies, circulating like edible confetti. For ‘dessert’, we laughed and licked our fingers over peppered gizzard and chicken suya, because who says sweetness can’t have heat? Everything was tasty and unapologetically generous. Aunties insisted on seconds with the kind of insistence that leaves you no honourable exit. Tips for researchers : Food is a consent-friendly conversation starter. Ask about ingredients, origins, and who taught the cook; you’ll certainly map migration routes and kin networks without a survey form. Regarding food etiquette, try what you’re offered unless you have allergies. If you decline, do so politely and explain your reason. A Civic Blessing       Lord Mayor of Sheffield Mid-afternoon brought a surge of pride as the Honourable Mayor of Sheffield, Councillor Safiya Saeed, arrived. The first female African Lord Mayor, leading a major city. Her presence drew cheers and the kind of applause that felt like a promise, saying, ‘Visibility matters.’ The mayor’s presence said: You belong here, not as guests, but as authors.   This was especially meaningful because the night before, at 7:10 pm, the event had been introduced live on BBC Radio Sheffield, Lincolnshire, Humber, and York, inviting the wider public to witness, and you could feel the difference, as new faces mingled with the regulars. Diaspora doesn’t whisper; it broadcasts.    Tips for researchers:  Track these civic touchpoints. Attendance by local officials isn’t symbolic fluff; it often unlocks venue access, funding pathways, and future partnerships. Ask organisers how they secured it; there’s a playbook hiding in plain sight. Lord Mayor and the Executives Memory, War, and the Will to Thrive People shared stories, some embroidered with humour, others shadowed by the ‘Biafran War’ (Nigerian Civil War, 1967-1970). And yet the through-line was unmistakable: resilience . There’s a saying I heard again: “If you go to a country and don’t find an Igbo person there, leave immediately; don’t invest.” It’s boastful, yes, but also a history lesson. A declaration that after hardship, industry became theology. You could see it in the vendors, the organisers ticking off logistics, and the way everyone cleaned the hall as if it were a grandmother’s sitting room. From the trauma of the Biafran war to the economies built in diaspora, “industrious” is not a stereotype here; it’s a survival skill. Tips for researchers:  Approach trauma histories with care. Let community members lead. Offer anonymity by default. Ask if there’s a preferred elder or historian ( Nze , Lolo , union PRO) to contextualise sensitive topics. What The Day Teaches What held me most was the intergenerational weave. Small hands tucked into larger ones during the blessing; teenagers watched the masquerade with a seriousness that read like study. Others, trying out steps from ‘Atilogwu’ dancers with the gravity of apprentices. Elders bent to their height to explain proverbs. You could see culture travelling the way it always has, hand to hand, laugh to laugh. By sunset, the drummers softened, and the hall smelled like wood polish and pepper soup. I felt that peculiar fullness festivals give you: fed, taught, and claimed. I also felt truly blessed to stand inside a tradition that endures, grateful to be part of a community that keeps its culture not in a museum case, but in motion, in music, in recipes, and in the way elders pass kola nuts and children learn the steps. To belong to a resilient species, one that plants itself wherever Igbo people settle and then bears fruit, year after year. ‘IRI-JI’ isn’t just a festival; it’s a community management system disguised as a party. It’s onboarding for the young, accountability for the titled, soft power for the diaspora, and a gift to the city that hosts us. Group Picture with Police Officers Tips for researchers:  If you come with humility and leave something useful behind, you won’t just study a festival; you’ll be welcomed back into a living tradition. And next August, when the yam returns, so will you. Author Dr. Ada Achinanya Research Associate

As part of UPTURN’s continued dedication to inclusive patient and public involvement (PPI), Lorraine Lawrence, one of the EDI Community Researchers, recently chaired the first Caribbean community PPI group meeting, held virtually via Zoom on 22nd May 2025.The session provided an important platform for people of Caribbean heritage to share their lived experiences, concerns, and reflections related to COPD and lung health. Designed by Freepik One of the most powerful themes to emerge was the role of smoking within Black Caribbean communities, and how it intersects with cultural norms. Some of the members shared personal stories about how smoking was viewed when they were growing up, sometimes as a norm. Smoking was common among older generations, and it was often tied to stress, work environments, and social habits. PPI members also highlighted how mainstream anti-smoking campaigns needed to be more visible, but often these messages failed to connect with Black audiences. The group discussed the importance of using trusted community channels like community groups, radio, and local leaders to communicate health messages. This first session focused on listening and onboarding. The next meeting, scheduled in August, will explore in greater depth some of the themes raised in our broader PPI group.  We are keen to hear the views of PPI members in our community-specific groups on these topics, and value all input. Lorraine would like to say a big thank you to everyone who joined and shared their thoughts in this important first meeting. Your voices are already helping guide the UPTURN project, and remind us that real equity in research starts with listening.

On 26th November 2024, in the heart of London, the UPTURN team hosted the first of our co-design workshops to begin the development of the UPTURN intervention to support attendance at pulmonary rehabilitation (PR) for people living with Chronic Obstructive Pulmonary Disease (COPD). The day brought together a diverse group of participants, including COPD patients and their carers, representatives from Asthma + Lung UK, physiotherapists, specialist nurses, and researchers, all united by a common goal: to support people to access PR in ways that address key barriers and enhance accessibility, cultural relevance, and impact. Building the Foundation The first co-design workshop was more than just an event; it was the culmination of extensive research, planning, and collaboration. At the heart of this approach was UPTURN’s definition of co-design - bringing together lived experience and professional expertise to work in equal partnership to develop a defined service or product using a specified participatory design-led process. This principle guided the workshop’s structure, ensuring that COPD patients and their carers played an active role alongside healthcare professionals in shaping interventions that were practical, inclusive, and culturally appropriate. In preparation for the event, the team meticulously refined objectives, developed participatory activities, and created an environment where all voices could contribute meaningfully. The session began with warm refreshments and introductions, creating a welcoming atmosphere for dialogue. Participants reviewed key research findings, including logistical, cultural, and informational barriers to PR. This shared understanding set the stage for collaborative problem-solving. Creative Energy in Action The workshop’s first activity was a brainstorming session designed to generate innovative ideas. Participants at four themed tables addressed specific goals, such as increasing confidence in PR and removing practical and cultural obstacles. Armed with colourful sticky notes and open minds, attendees spent 40 minutes proposing ideas ranging from community-led promotion to tech-based solutions. A dot-voting system was used to prioritise ideas. Green dots highlighted the top ideas, while blue dots indicated promising but secondary concepts. This process gave every participant a voice and surfaced a shortlist of actionable solutions. Stories That Shape Solutions The post-lunch storytelling session was the workshop's highlight. Participants were introduced to ‘personas, derived from our primary data collection and analysis of the literature. These personals representing diverse COPD patients, carers, and healthcare professionals. Each table explored how their shortlisted ideas could impact these characters’ journeys to accessing PR. For example, Azra, a non-English-speaking patient, imagined receiving support from a bilingual community health worker who explained PR benefits in her language. Meanwhile, Abdul, facing stigma, gained confidence through peer-led testimonials and relatable PR materials. These narratives helped participants empathise with real-world challenges while testing the feasibility of their solutions. Through this exercise, nuanced insights emerged. How can testimonials from community members be used to encourage others to attend PR? Would a supportive phone call help address fears and concerns? The rich discussion shaped our thoughts on how the UPTURN intervention can address these questions. As we move forward, the insights gained from this session will be further explored and developed by Asthma & Lung, the UPTURN research team, and our community user testing groups before the next co-design session in Spring 2025. Shared Reflections and What’s Next This workshop exemplified the power and potential of co-design. By centering lived experience and drawing on multidisciplinary expertise, the team generated a wide range of practical ideas to inform the development of the UPTURN intervention. The enthusiasm, creativity, and shared commitment of everyone involved created a foundation for meaningful change. As the day concluded, participants reflected on the workshop’s success and outlined the next steps. The ideas generated will be transformed into prototypes for testing before the next workshop, scheduled for April. The goal is to refine our ideas into an intervention that is inclusive, effective, and adaptable to diverse needs. Stay tuned as we continue our co-design journey! Authors: Dr MMG Rabbani Dr Ada Achinanya Dr Tahsin Tabassum Lorraine Lawrence Sara Langston Dr James Ward Dr Timos Kipouros Dr Amanda Moore

Equality, Diversity and Inclusion (EDI) are integral to conducting impactful health and care research that can improve outcomes for all groups in society. On 21 st  May 2025, the UPTURN EDI team was delighted to attend the 14th Making Diversity Interventions Count Annual Conference , held at the University of Bradford. Bradford – city of culture 2025. City of incredible cultural diversity. And the city in which, many moons ago, I (Suman) did my undergraduate degree in Social Sciences. And so I was thrilled to return, this time with the UPTURN Community Researchers, to deliver a 1-hour workshop on ‘Embedding EDI in Health and Care Research: the UPTURN intervention’. The day turned out to be one of deep learning, inspiring conversations, and meaningful networking.   Pic 1: UPTURN EDI Workstream team Keynote talks and key takeaways The morning – crisp outside and brimming with excitement inside the auditorium – started with presentations from prominent leaders in the EDI field. Professor Udy Archibong (Pro Vice Chancellor, EDI, University of Bradford) hosted the conference and reflected on the plethora of diversity statements posted after the murder of George Floyd, current challenges, and threats to moving towards greater inclusivity. She stressed the importance of celebrating diversity and our shared humanity, especially during times of turbulence and anti-EDI (or DEI) sentiment.  Pascal Matthias (Associate Vice President EDI and Social Justice, Southampton University) followed, and had the audience captivated with his compelling talk on inclusive education for all, the importance of compassion, and urgent need for accountability. Inequalities in educational attainment persist and, while universities are good at raising awareness of this, Pascal stressed the need “ to move from awareness to accountability…Accountability is the discipline of action…Awareness without accountability is theatre, it’s performance .”   Farrah Qureshi (CEO & Founder, Global Diversity Practice & Inclusion Intelligence) reflected on challenges to EDI across the globe, and changing language and terms. She questioned whether we were witnessing the death of DEI or a rebirth into something better. She highlighted the importance of lived experience, and learning from efforts and initiatives being carried out in a range of countries around the world.      EDI in the UPTURN study Our workshop started with my presentation on the importance of embedding EDI in health and care research, from study design to dissemination. Ethnic minority (global majority) groups make up around 18% of the population in England and Wales (1) but are underrepresented in health research. This leads to gaps in knowledge, disparities in care, and inequalities in health outcomes. Conducting inclusive research helps ensure that studies address the needs and experiences of diverse populations, making findings more applicable (2). The UPTURN study includes an EDI Workstream throughout the 5-year NIHR-funded programme, and so we are continually reflecting on diversity in terms of the people and processes involved (3). This includes the research team, PPI groups and steering committees, as well as inclusivity in terms of recruitment, study materials, and the languages and formats that these are available in. Lorraine followed next with a talk on the vital role of community engagement and building trust. This includes listening, learning, and transparency about the study goals and benefits to communities. Patient and Public Involvement is crucial too, and Rabbani emphasised the key role of the five PPI groups contributing to the UPTURN study. We have a broad PPI group for all communities, and four smaller groups for Bangladeshi men, Bangladeshi women, Caribbean communities, and African communities – groups that are disproportionately affected by COPD. Study materials need to be accessible to all the communities we are working with, and Tahsin gave a practical example of our work with Bangladeshi patients and carers. This included recruitment through community leaders and centres; developing culturally appropriate recruitment videos; and conducting interviews and focus groups in English, Bengali and Sylheti. Ada wrapped up by highlighting the importance of reflexivity, identity and team dynamics. Awareness of, and ongoing reflection on, how these influence the research process is essential, as well as acknowledging power dynamics.     Pic 2a – collage of individual talks in order of presentation Workshop discussion and feedback Small group discussions followed our brief presentations, and aimed to support reflection on the challenges and opportunities to improving diversity in health research. This was an opportunity for participants to share their experiences, ask questions, and exchange knowledge and learning on conducting inclusive research. Engaged participants, mostly researchers, were keen to share some critical points: the strengths of diverse teams with researchers fluent in multiple languages, and with knowledge and skills to work with a range of ethnic minority groups translation of study materials into relevant community languages, including questionnaires where possible importance of cultural humility and outreach activities with community organisations hearing about the experiences of other researchers and sharing learning reflexivity in the moment, and not just when conducting interviews or analysing the data awareness of community expectations of the research and how these may differ from what the study can deliver training needed for researchers to support them to be able to conduct inclusive research   Food for thought…. One of the highlights of the conference was connecting with others working in the fulfilling, important, challenging, and ever-evolving space of ‘EDI’. It felt validating and affirming as much as it was thought-provoking, and some of the discussions on hope and compassion particularly resonated. We reflected on these afterwards too. Bradford is famous for its ‘curries’, and we couldn’t leave without a debrief over some sumptuous food and tantalising flavours. The perfect end to an inspirational day, and a fantastic opportunity to celebrate our first year of working together as a team.   Pic 3 – debrief in restaurant Acknowledgements We are grateful to Cambridge Biomedical Research Centre who provided funding for us to attend the conference.   References 2021 Census: https://www.ethnicity-facts-figures.service.gov.uk/uk-population-by-ethnicity/national-and-regional-populations/population-of-england-and-wales/latest/   Prinjha S, Miah N, Ali E, Farmer A .  Including ‘seldom heard’ views in research: opportunities, challenges and recommendations from focus groups with British South Asian people with type 2 diabetes.  BMC Med Res Methodol   20 , 157 (2020). https://doi.org/10.1186/s12874-020-01045-4 The UPTURN study: https://www.fundingawards.nihr.ac.uk/award/NIHR204401     Author: Suman Prinjha (EDI Lead, UPTURN)   UPTURN Community Researchers Ada Achinanya Lorraine Lawrence Rabbani Golam Tahsin Tabassum

From Columbia to South Africa, we gathered in Lisbon to explore co-design Twenty-six participants from 10 countries joined us in Lisbon last month to get practical hands-on experience of using creative co-design methods and to consider how best to use these methods along-side the behaviour change wheel. UPTURN Behavioural Scientist Dr Amanda Moore was joined by Dr Ana Gama (NOVA School of Public Health, Lisbon) to deliver an activity-packed, full-day workshop. It was great to use our experiences and data from UPTURN to help guide the practical activities and explore the thorny question of how best to integrate a participatory co-design mind set with more rigid behavioural science intervention design frameworks to develop effective, co-designed interventions. Co-design as a participatory approach Co-design is central to the ethos of the UPTURN study. There’s a lot of confusion about the ‘co-’ words! To echo the most common framing of co-design and co-production, co-design is a category within the co-production umbrella that follows pre-determined steps of a collaborative design process with the end goal of designing a specific product or service (1). The 4 key principles of co-production apply to co-design – a sharing of power, use of participatory methods to ensure equitable engagement of all stakeholders, a relationship mindset to build a long-term partnership (one thing co-design isn’t, is a group of researchers nipping in to do a workshop with a community and then disappearing again!) and a mindset of building capacity of all partners (2). What differentiates co-design from co-production more generally, is the use of a defined design-led process to develop a specific service or product. On the UPTURN study our definition of co-design is: “Bringing together lived experience and professional expertise to work in equal partnership to develop a defined service or product using a specified participatory design-led process.” (UPTURN Study, 2024) Central to the ethos of co-design is to work in partnership with the individuals the service is intended to support, throughout the design process. Crucially, when considering working with people from minoritised ethnic groups, who may face barriers associated with language or health literacy, we must consider developing creative ways to capture lived experience stories and involve people in the process in an accessible way. That means working hard to engage those facing the greatest inequities and thinking beyond traditional qualitative methods, such as interviews and focus groups. Co-design follows the Design Council double diamond approach of moving from exploration the problem space, through to defining the problem or scope, and ideating, prototyping and testing potential solutions, iterating and refining your ideas. It is an adaptive, flexible, creative approach where ideas are developed from collective input of the co-design team. Figure 1: Schematic representation of the double-diamond design process (Modified from Lewrick 2020 and the Design Council) The importance of developing interventions in a theoretical informed way From a behaviour science perspective, we know that interventions are more likely to be effective if they are theoretically informed (3, 4). The Behaviour Change Wheel (5) is a framework for developing interventions, which synthesises 19 behaviour change frameworks. It is a useful step-by-step framework to take the intervention designer from specifying the behaviour, carrying out a behavioural diagnosis, through to choosing appropriate intervention functions and associated evidence-based behaviour change techniques (BCTs) to inform the choice of intervention components. Developing your intervention in this way allows the documentation of the theory of change from the understanding of barriers and enablers influencing the performance of the behaviour, through to the mechanisms of actions through which your intervention will bring about change, to the linked core active ingredients of the intervention – the BCTs, such as Goal setting or Social comparison. This clear evidence chain of the theory of change of the intervention allows interventions to be replicated and evaluated much more easily as there is a clear understanding of how the intervention is intended to change the behaviour in question (see Figure 2). In UPTURN we have used the Behaviour Change Wheel to understand the barriers and enablers to engaging with PR and identify potential behaviour change techniques to address these.  This formed the basis of the design brief for our series of co-design workshops. Figure 2: Summary of COM-B and the Behaviour Change Wheel Process (Michie 2014) Practical activities based on the UPTURN data Our Lisbon workshop participants used UPTURN as a case study throughout the day. This included reviewing some of the findings of the exploratory UPTURN research, in terms of the barriers and enablers to engagement and attendance at PR and role playing using our UPTURN co-design personas, developed from the UPTURN data. Figure 3: Barriers and Enablers to PR - data from the UPTURN study Activities involved engagement with a range of generative co-design methods including plasticine modelling to explore lived experiences of COPD, structured brainstorming, journey mapping of the COPD patient journey to PR and running a feedback grid session to gain user feedback on intervention components. Outcomes and creating a network to support intervention designers The session was over-subscribed and one participant reported ‘a truly hands-on and insightful session’, that was ‘absolutely mind-blowing’. Takeaways included: ‘co-design means shared power not just consultation; positive strength-based approaches enhance community engagement and ownership; and trust takes time but is essential for meaningful change’. The group were so engaged we have decided to set up a practitioner network – The Co-design for Behaviour Change Network. Our new network meets quarterly and is an opportunity to collaborate and share learning.  You can join the network to learn about our seminars and to have access to resources here: https://forms.office.com/e/p8XyF2PP35 References 1.             Robert G, Locock L, Williams O, Cornwell J, Donetto S, Goodrich J. Co-Producing and Co-Designing. Cambridge: Cambridge University Press; 2022. Available from: https://www.cambridge.org/core/product/157832BBAE1448211365D396CD110900 . 2.             McKercher KA. Beyond sticky notes. Cammeraygal: Inscope Books; 2020. 3.             Michie S, Fixsen D, Grimshaw JM, Eccles MP. Specifying and reporting complex behaviour change interventions: the need for a scientific method. Implement Sci. 2009; 4:40. 4.             Michie S, Webb TL, Sniehotta FF. The importance of making explicit links between theoretical constructs and behaviour change techniques. Addiction. 2010; 105:1897-8. 5.             Michie S, Van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implementation science. 2011; 6:1-12.