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On Thursday, 27th March 2025, I (in collaboration with Sylvie, the Manager at SADACCA) organised and hosted a lung health information session at the SADACCA daycare centre in Sheffield. SADACCA (Sheffield and District African Caribbean Community Association) is a Black African and Caribbean organisation that was set up in 1986. The organisation is dedicated to meeting the health needs of the African and Caribbean communities. The organisation “acts as an anchor organisation serving the needs of the communities in the Riverside and Wicker as a bridge between the heart of the city.” For more information, see https://sadacca.co.uk/ Here’s my reflection of the day. It was a sunny afternoon, the kind of gentle sunshine that nudges away worries and breathes warmth into your bones. At precisely 2pm, I arrived at the SADACCA daycare centre, a building that stood modest yet inviting, basking quietly in the sunlight. As I stepped from the street towards the entrance, uncertainty tugged lightly at my heart—an uncertainty borne out of wondering how the afternoon would unfold. But I decided, as always, to step forward with a smile despite the gentle limp and the rhythmic tapping of my walking stick against the pavement. I had sustained a foot fracture about a month ago but was determined not to let it stop me. As I opened the door, a rush of warmth greeted me—not just from the indoor heating but from the faces inside. A group of older gentlemen sat clustered around tables, engrossed in lively discussions, cups of tea steaming gently in their hands, plates scattered with half-eaten cake and ice cream, the familiar comfort of afternoon treats. The welcoming gleam of recognition lit their faces as soon as I stepped through the doorway, their cheerful conversation pausing momentarily as concern and curiosity mingled in their gazes. One of them smiled knowingly, glancing pointedly at my foot and walking stick. Another offered a warm nod of understanding as if to say, "You're among friends here." Their silent welcome softened any apprehension I had, and I moved forward with more confidence. Across the room, I spotted Sylvie, my gracious host, whose eyes brightened upon seeing me. She approached, expressing genuine concern about my foot, her compassionate inquiries warming my heart. Sylvie shared with gentle honesty that not many had signed up specifically for the event. But ever resourceful, she encouraged me to visit the tables directly and speak with people face-to-face, even handing me contacts for nearby Caribbean churches to extend my reach further. She told me about chair exercises they had just finished, her voice lively with enthusiasm. "It's comfortable and inclusive," she said, "everyone cheers each other on. We want to ensure our community stays active and supported, especially before the big lunch”, she said with a knowing smile. Sylvie then turned toward the group and warmly announced my presence, gently ushering me to take centre stage. I smiled broadly, took a breath, and announced I'd join them table by table. Approaching the nearest table, I immediately recognised a familiar face from a previous visit. His eyes sparkled with mischievous recognition.                      A group of men sitting around the table "I remember you," he teased warmly, "but last time, you weren't as old!" His eyes lingered humorously on my walking stick, and laughter bubbled up around the table. "Now that's very Jamaican of me," he continued, chuckling, "because a white person probably wouldn't be so nosey!" We shared hearty laughter as I explained my broken foot, making light of the situation to reassure them—and perhaps myself—that I was indeed recovering well. Introductions flowed effortlessly. I began by sharing that I was a researcher from the University of York, specifically focusing on lung health. Initially, five people, a thoughtful and attentive group of men and women aged probably between 50 and 70 years, joined this discussion—a smaller, more intimate gathering compared to the lively meet-and-greet I previously attended with my colleague Lorraine. A DAY AT SADACCA: Beyond Research and Into Connection The conversation deepened quickly. Two men on the table revealed their own struggles with asthma, proudly presenting their Salbutamol inhalers. One gentleman leaned forward, eyes alight with memory, recounting his childhood days in Jamaica, vividly describing tobacco leaves and hot ashes wrapped around his small chest to ease his breathing. "Did it work?" I asked, captivated. He nodded slowly, reflecting on simpler times before modern medicine. Another chimed in, raising his inhaler triumphantly, "Now we've got this little thing—times have certainly changed." The discussion gently drifted toward sleep apnoea. Stories unfolded with ease and honesty. One man's humorous yet poignant experiences of life with a CPAP machine prompted others to share anecdotes filled with laughter and empathetic nods. A lady curiously asked if sleep apnoea could indeed be cured, sharing a story of her sister who claimed that a new-found romance had miraculously resolved her condition. Humour filled the air again as one gentleman joked, "Well, it's tough being romantic with that big mask around your face every night! It’ll certainly dampen the mood". Warm laughter rippled through the table. The engaging dialogue drew others from the far table, curiosity propelling them toward us. Soon, the group expanded, a circle of inquisitive faces eagerly absorbing information about COPD. As I explained our research goals, their attentive nods and thoughtful questions energised me. They asked perceptively about the differences between COPD and asthma, and I carefully unpacked these distinctions, aware of how meaningful this exchange was becoming. Some had heard about COPD before, but others hadn't.    A group of people sitting around the table I circulated the flyers and booklets across the table, conversations blossoming beyond research topics into deeper personal connections. Then, one man’s eyes fell on my name, curiosity sparking recognition. He leaned forward, smiling broadly, "You're Nigerian—Igbo, right?" Our shared heritage lit up the conversation, drawing intrigued smiles from others. He proudly shared his decades-long journey as a chemist in Sheffield, highlighting his pioneering role in establishing clean air zones through grassroots community involvement. His voice swelled with quiet pride, recounting how distributing air pollution-detection canisters to locals had awakened a powerful community awareness of pollution within their environment. His words resonated profoundly, affirming the very heart of community research—engagement driven by trust, education, and mutual respect. He invited me to speak about UPTURN at the local Igbo community’s monthly gathering, an offer that touched me deeply. Our interaction left me profoundly humbled and reminded me of the beautiful interconnectedness of culture, health, and identity. As the afternoon faded, I gathered my things and exchanged final warm goodbyes. On the bus journey home, reflections gently crowded my mind, the day's stories and smiles merging with the fading sunlight. The warmth of genuine connections lingered powerfully. Today had been more than just community outreach—it had been about humanity, compassion, and the shared, hopeful vision of better health and lives richly intertwined.   Ada in front of SADACCA Indeed, it had been a profoundly fulfilling day.   Author Dr Ada Achinanya Research Associate, University of York

Background The England and Wales 2021 Census  highlights that 18.7% of the UK population, almost one in five people,  are from ethnic minority groups. While this diversity shapes British society, health inequalities disproportionately affect many of these minority communities. Chronic conditions such as  Chronic Obstructive Pulmonary Disease (COPD) are more prevalent in people from Black and South Asian groups, and particularly Bangladeshi and Caribbean communities. According to a study on Health Equity in England , in 2018 nearly 40% of ethnic minority people in the UK were living in poverty compared to 19% of White British individuals, underscoring the intersection of health and social inequalities in shaping outcomes. Over a million people in the UK live with COPD, a lung condition that causes breathlessness, wheezing and other symptoms. Reports suggest  that there is a strong link between respiratory diseases, deprivation and health inequalities. This increased risk is often linked to higher exposure to risk factors such as smoking, poor housing and occupational hazards.   Studies available highlight that ethnic minority communities in the UK face significant barriers to accessing timely healthcare, including referral and take-up of pulmonary rehabilitation (PR) services, a programme combining exercise and education that helps manage symptoms. Factors such as language difficulties, cultural (mis)perceptions, and socioeconomic disadvantage contribute to these health inequalities, often making it harder for minority groups to access the care and information they need to manage their COPD and live well with it.   Lack of COPD research with ethnic minority groups Research on COPD and the experiences of ethnic minority groups in the UK is notably limited. This gap hampers the ability to understand and address the complex drivers of health disparities. One significant challenge is the underrepresentation of ethnic minority groups in clinical trials and broader health research. This underrepresentation skews data, leading to findings that may not be generalisable to the entire population. Barriers like mistrust in the healthcare system, language differences, and a lack of culturally tailored recruitment strategies further exacerbate this issue. Researchers also struggle to disaggregate health data by ethnicity, as many datasets fail to capture nuanced categories or to consider intersecting factors like migration status and socioeconomic conditions. The NHS Race and Health Observatory  has pointed out that institutional biases within research design, funding, and academic structures often prioritise mainstream health issues, leaving those affecting minority populations underexplored. Without more granular data, it becomes difficult to develop effective interventions or policies aimed at reducing health inequalities.   The Importance of  Inclusive Research Embedding Equality, Diversity and Inclusion (EDI) in research is vital to addressing health inequalities. The UPTURN study, which focuses on COPD and health disparities,  is addressing this challenge by incorporating an EDI workstream throughout the 5-year programme of research. We consider inclusivity in all the study work packages, community engagement, patient public involvement (PPI), and dissemination. EDI is not only an ethical imperative but also enhances engagement with minority communities and takes into consideration language and cultural competence. This helps ensure that research truly includes the experiences of underserved populations, adding depth to the findings. Inclusive research is crucial for ensuring that interventions like pulmonary rehabilitation meet the needs of all communities. By integrating perspectives from deprived and ethnic minority groups, this research aims to address barriers to attendance and deliver culturally sensitive support, ultimately improving access, reducing health inequalities, and enhancing patient outcomes.   Summing up…. While the inclusion of EDI in health research offers numerous benefits, it can be challenging to know how best to integrate it throughout a study. The UPTURN EDI workstream is a novel approach to research inclusion and there will be a lot of learning along the way. It will be important to share experiences, challenges and successes along the way, and support other researchers  in the wider adoption of inclusive research practices. Producing toolkits, providing training, and disseminating lessons learned through blogs and academic articles are effective ways to promoting EDI in health research. As the research landscape continues to evolve, it is becoming increasingly clear that incorporating EDI in our work is essential. Funders now also expect EDI to be embedded in every stage of research, from recruitment and data collection to dissemination and impact assessment. This shift signals a growing recognition of the importance of inclusivity in producing robust, meaningful research that can genuinely reduce health inequalities.   About the Author: M M Golam Rabbani (He/Him) is a mixed-methods researcher, filmmaker, and environmental activist of Bengali heritage. After completing his PhD, which focused on non-migration behaviour in response to increasing environmental stresses, he worked on projects related to climate adaptation, entrepreneurship incubation, and circular sanitation across Asia and Africa. He is now part of the UPTURN-EDI team, at the University of York, where he contributes to the co-design  of a culturally tailored Pulmonary Rehabilitation (PR) service for COPD patients in the UK.

On Thursday 30th January 2025, two of us, Lorraine and Ada, attended a meet-and-greet session at the SADACCA daycare centre in Sheffield. SADACCA (Sheffield and District African Caribbean Community Association) is a Black African and Caribbean organisation which was set up in 1986. The organisation is dedicated to meeting the health needs of the African and Caribbean communities. The organisation “acts as an anchor organisation serving the needs of the communities in the Riverside and Wicker as a bridge between the heart of the city.” For more information, see https://sadacca.co.uk/ We were there to connect with members of the African Caribbean community, share our research on COPD and pulmonary rehabilitation, and learn from their lived experiences.      For all of us, our experiences were shaped by our backgrounds and unique perspectives. Here’s a reflection on the day from both of us as we came together to listen, share, and learn. Lorraine and Ada in front of SADACCA Lorraine:  The cold Sheffield air brushed my cheeks as I left the train station and made my way to SADACCA. The day felt important. I was attending a community engagement session to connect with Black African and Caribbean elders, and to talk to them about Chronic Obstructive Pulmonary Disease (COPD) and Pulmonary Rehabilitation (PR), a transformative treatment including exercise and information. The warmth inside the building was immediately welcoming, with the scent of home cooking in the air, reggae music protruding through the speakers, all of which were comforting and spoke of home and community. I saw faces etched with stories and faces that held the wisdom of generations. This feeling reminded me of being a child, and in particular, Sunday mornings. The smell of spices familiar to me, and food which had been marinated for hours with an abundance of spice - and cooked with love. This was the smell of home, which transported me back to being sat at the dining table, where mountains of Caribbean food was served, where family would gather, and loud conversations and boisterous laughter would fill the room. Ada :  As a Nigerian woman stepping into the heart of an African-Caribbean community in Sheffield, I couldn’t help but feel a little bit like an outsider. Sure, we shared the same skin tone, and my colleague, Lorraine, was there with me, but the nuances of culture and experience between our two communities were quite different. Nevertheless, I knew this wasn’t just about the research—it was about real people, real stories, and meaningful conversations. And what an enriching, unexpected experience it turned out to be. Lorraine and I were at the Day Care Centre for what was supposed to be a quick meet-and-greet session—an hour and a half at most. However, I didn’t anticipate that the day would extend to almost four hours, leaving me with a heart full of insights, a head buzzing with new perspectives, and a strong sense of belonging despite initially feeling out of place. Lorraine sitting with a gentleman Lorraine:  As someone who is passionate about health equity, I knew that this community engagement session was more than just delivering information: it was about building trust and understanding, with a community underserved by research and health services, and facing unique challenges. As we worked the room, Ada (my colleague) and I spoke to an elderly man who shared his personal experience with COPD, the difficulties with breathing, challenges with the healthcare system, and the impact on his daily life. We rarely hear these stories because there is so little published literature on the experiences of African and Caribbean people with COPD.  We moved on to another table where we sat with a group of men who were a bit dubious at first but warmly welcomed us, sharing laughter and insights about the challenges and joys of aging in Sheffield. I heard of the loss of a community that once welcomed people and how this has changed. Some of the elders who once attended the centre have since passed on. Maintaining cultural traditions can sometimes feel like a losing battle when faced with the tide of modern-day life. Ada:  I, too, felt the gentlemen were a lively, energetic bunch, eagerly sharing their stories, their cultures?, and their thoughts on everything from dominoes to the Notting Hill Carnival. And oh, how they spoke about Carnival—this celebration of life, music, and unity. They described the vibrancy, the rhythm, and the pulse of the event, but there was a tinge of sadness when they talked about how some British people didn’t quite understand the essence of it. They’d smile and laugh, but you could tell there was a deeper story they weren’t always ready to tell. We talked about health too, which, of course, was the real reason we were there. Some of them had never smoked, while others talked about how they avoided the doctor at all costs. But there was one topic that I couldn’t quite crack—what would make them go to the doctor? Or, in our case, a PR session? The answer eluded us despite my best efforts to dig deeper. Perhaps it’s the trust issue or the fear of being dismissed—something that I, as an African woman, could relate to. But for all the conversations, I still didn’t get that one golden answer. Lorraine:  I learned about the importance of taking care of yourself, and the importance of faith, family and community. For many Black elders, their faith is an integral part of their culture and traditions. Practising their Christian faith helps them maintain their cultural identity and to remain connected to their roots. One of the elders mentioned that his faith is a powerful coping mechanism which helps when his health causes him stress, and during times of adversity and loss. For this elder, faith provides a sense of comfort, hope and resilience. Having these discussions underscored the importance of community engagement and of creating a safe space for sharing, learning, and building trust. It became clear that cultural sensitivity wasn’t just about language but about understanding the lived experiences, the cultural beliefs, and the historical context that shapes health outcomes. The SADACCA centre is a vibrant hub for Black elders, full of vitality and life, but amidst this lively venue, a more subtle thread weaves its presence, and a sense of unease arises when it comes to the conversation of researchers. For many of the elders, the arrival of so-called ‘outsiders’ brings a cautious optimism. A hope that their experiences, which are often marginalised, will be heard and valued. These elders have often opened their doors, their lives, and their memories to unfamiliar faces armed with whiteboards and presentations. The conversations with the elders reveal a complex mix of sentiments long after the researchers have packed up their belongings, armed with the data they need. A recurring theme is the longing for genuine engagement beyond data collection, as too often, the elders have felt like subjects, not partners, in a research process that seems beneficial primarily to the researchers themselves. As one person remarked, “They come, they ask, they write, they disturb our domino play, then we hear nothing.”  Ada:  I felt that one of the younger men in the group (65 years) shared something quite profound: "Researchers come here all the time," he said with a knowing grin. "They talk to us about their research, but by the end of it, most of the older gentlemen are either asleep or thinking about the lunch we’re about to have.” He continued by saying that he always wonders whether those researchers feel they truly connect with the people they’re studying. “I’m sure they leave wondering if they got their point across,” he said." He paused for effect before adding, "But you, you guys came and spent time with us. You talked with us, not at us." His words hit home in a way I wasn’t prepared for. In that moment, I realised how important my coming there that day was and how much of our work on this project (UPTURN) is tied to making these connections. We hadn’t just gone there to “collect data” or “ask questions.” We had gone to connect . I had gone to learn , and in doing so, I had respected them as people, not just participants in our research. It was a reminder that we, as researchers, often forget: It’s not just about what we ask —it’s about how we listen . This was the moment I started to feel like an insider, not because of the shared blackness but because of the shared respect. The respect for who they were, what they had lived through, and what they had to teach me. And yet, even with the camaraderie, there was always that subtle distance—a line between them and me that no amount of skin colour could erase. But somehow, it felt okay. I didn’t need to be them to understand them, and they didn’t need to be me to open up to me. It was enough that we were there together, having that moment in time. Four hours flew by in what felt like the blink of an eye. As we packed up to leave, I felt like I’d earned something that no survey or interview guide could give me: a glimpse into lives lived in full colour and a deeper understanding of the people I was there to serve. UPTURN flyers, Asthma + Lung UK flyers and a SADACCA mug Lorraine:  As the day ended, I felt a sense of profound respect and gratitude. I was grateful for the opportunity to witness the strength and resilience of this community and for the dedication of the organiser who made our day possible. These community spaces are so important as they often play a vital role in fostering social cohesion, advocating for equality, reducing isolation, and preserving cultural heritage. Ada:  I walked away that day with my heart fuller, my curiosity more piqued, and my respect for the Caribbean community in Sheffield profoundly deepened. Sure, I didn’t get the answers I thought I was going to get—but I got so much more. And for that, I am grateful. Lorraine:  The journey back was different. The Sheffield air was still cold, but I didn’t notice it as much. My mind was packed with the stories that I had heard and the lessons I’d learnt. It was a day that touched my heart. I had learnt so much more about the true meaning of community engagement, and I looked forward to returning. Authors: Dr. Ada Achinanya, Research Associate (UPTURN) Department of Health Science, University of York   Lorraine Lawrence, Community Researcher (UPTURN) Department of Health Science, University of York

International Women’s Day is a time for reflection and celebration. Ada and Lorraine, Community Researchers on the UPTURN COPD project, had the privilege of attending the Caribbean and African Health Network’s (CAHN) International Women’s Day event on 7th March 2025. CAHN is an organisation dedicated to addressing health inequalities affecting Black Caribbean and African communities. For more information about the organisation, visit https://www.cahn.org.uk/   Our backgrounds and unique perspectives shaped our experiences. Here’s a reflection of the day as we came together to listen, share and learn. Ada Achinanya and Lorraine Lawrence Ada:  The morning sky over Sheffield was cloudy, heavy with grey, almost looking like it would rain, yet whispering quiet promises of a meaningful day ahead as the Northern Express train gently rocked me into introspection on its journey to Manchester. A journey I anticipated for its professional potential yet deeply personal resonance. My colleague Lorraine had invited me to attend the International Women’s Day event hosted by the Caribbean and African Health Network (CAHN). The theme, "Womb Health," struck a personal chord. As an African woman in her thirties navigating recent battles with fibroids, the opportunity to immerse myself in this gathering felt deeply poignant. My thoughts drifted to family histories whispered in kitchens, shared quietly among aunts and mothers, their pain rarely validated by medical or societal understanding. Upon arrival at Manchester station, the briskness of the March morning prompted a quick Uber ride to the venue, anticipation building in my chest. Lorraine:  Upon entering the venue, the atmosphere was full of vibrancy, filled with a sense of sisterhood, solidarity and empowerment. The venue was adorned with decorations and filled with the aroma of delicious African cuisine, which created an inviting ambience. Ada : Lorraine and I began setting up our stall, carefully laying out materials (brochures, leaflets) focused on COPD, lung health and our research (UPTURN). With cups of tea warming our hands, we welcomed people who approached, eager to discuss COPD and our research. The lady at the stall next to us, on recognising the letters ‘ COPD ’  on our leaflets, visibly felt shivers of sadness as she shared a difficult  story of how her neighbour had tragically lost a son to COPD. Moved and curious, we gently inquired about the neighbour's ethnicity, contemplating if we could sensitively invite her to join our PPI group as a ‘lived-experience carer’ after a suitable period of mourning, of course. Delegates began trooping in, filling the room with quiet chatter as everyone settled into their seats in the auditorium. The room buzzed with quiet strength, anticipation, and unity, signalling that the day's events were about to begin. Lorraine:  The day consisted of an inspiring gathering which focused on the crucial theme of “Womb Health in a Digital Era.” A line-up of inspirational speakers and performers shared their expertise, experiences and perspectives on women’s health and well-being. For me, one of the highlights of the event was an inspiring speaker called Clotilde Abe, who is the Co-Founder of Five X More, an organisation set up to advocate for Black maternal health. She shared her personal journey of overcoming health challenges and how she used her experiences to create a space for other women to connect. For more information about the organisation, visit https://fivexmore.org/ Ada:  More and more speakers took the stage, each narrative building a tapestry of shared experiences and unwavering advocacy. Tina Backhouse’s words (General Manager at Thermax) echoed in the auditorium and in my heart: “All women should have the same choice, no matter their colour, where they live, or what they earn. It should always be their choice.” Her call to challenge biases to educate the gatekeepers of healthcare resonated deeply. She reminded us that visibility and advocacy were essential pathways to change. Trafford Council representative - Sara Todd Listening to the representative from Trafford Women’s Voices, my admiration swelled. Their focus on the localised needs of Black women, and their fight to arm young girls and women with knowledge of menstrual, sexual, and contraceptive health, showed me how grassroots efforts truly shape lived realities. Yet, it was Dr Ngozi Edi-Osagie’s speech that held the room in profound silence. Her name, 'Ngozi,' resonated immediately—an Igbo name from Nigeria meaning 'God's favour,' familiar and comforting as I recognised it from my own heritage. Her tireless research aimed to combat the high mortality rate among neonates who often die from jaundice because the yellowish pigment is difficult to recognise in the skin of B lack babies, causing healthcare professionals to overlook it before discharge. Her struggle to have her findings recognised was a stark reminder of the uphill battles women of colour face. Her words etched into my memory: ‘Advocacy demands evidence’. As a researcher, this truth resonated deeply. I felt both challenged and inspired to hold firm in my pursuit, not only professionally but personally. Dr Ngozi Edi-Osagie During the breakout sessions, I gravitated naturally to discussions on fibroids. Sitting among women, young and old, courageously sharing intimate battles against a healthcare system often dismissive or dismissing, I found myself profoundly moved. Their raw, vulnerable stories mirrored my recent diagnosis, validating fears I had yet to fully acknowledge. Hearing stories of dismissals, of invasive treatments offered casually, of women labelled as 'over-dramatic,' a quiet anger and resolve ignited within me. Ada (arrow) with other women sharing experiences Lorraine:  While seemingly unrelated to the main theme of the event, the presence of the UPTURN stall was a hive of activity, with attendees eager to learn about the project and its impact. We spoke with attendees about early diagnosis and treatment of COPD, as well as the benefits of Pulmonary Rehabilitation. Lorraine with an attendee at the UPTURN stall Ada:  After the event concluded, we enjoyed food thoughtfully prepared, including smoky jollof rice reminiscent of home, flavourful jerk chicken, fresh salad, and puff-puff, a Nigerian dessert snack that offered a comforting taste of nostalgia and belonging. Lorraine:  The CAHN event aligned with the UPTURN project’s commitment to addressing health disparities. By attending the event, we aimed to raise awareness of the challenges faced by women with COPD, particularly those from minority and marginalised communities. Ada:  Initially, I attended with professional ambitions, hoping to discuss COPD, share my research, and potentially recruit participants. Instead, I received something far richer—a collective strength, a deeper understanding, and the reassurance that my experiences and those of countless Black women deserved acknowledgement, advocacy, and systemic change. The powerful talks and personal stories resonated deeply with the work we’re doing on the UPTURN research project, highlighting how minority groups often find themselves underrepresented or why they choose not to engage with healthcare services. Our research aims precisely to bridge these gaps, improve health inequalities, and ensure that marginalised voices are heard and valued in healthcare contexts, specifically pulmonary rehabilitation. Lorraine:  As we left the event, I felt inspired, energised and grateful for the opportunity to be part of such an impactful event. We look forward to continuing our relationship with CAHN. Thank you, Charles Kwaku Odoi and the CAHN team, for a brilliant day. Ada: The return journey to Sheffield was quieter, and my heart was full of newfound determination. As the train rolled gently homeward beneath a fading sky, I reflected deeply. This day had gifted me not just knowledge but a profound sense of purpose and community — a reminder that my voice, intertwined with others, could indeed foster change. Deep gratitude settled within me as I silently thanked Lorraine for inviting me, knowing her thoughtful gesture had opened doors to greater understanding and meaningful connections. Lorraine, Charles Kwaku-Odoi (CAHN Chief Executive) and Ada Authors: Dr. Ada Achinanya, Research Associate (UPTURN) Department of Health Science, University of York   Lorraine Lawrence, Community Researcher (UPTURN) Department of Health Science, University of York

On 24th September 2024, the UPTURN EDI Workstream team was invited to present our learning so far on Equality, Diversity, and Inclusion (EDI) in the NIHR-funded UPTURN research study: https://www.cuh.nhs.uk/our-services/respiratory-medicine-lungs/upturn-study/ “UPTURN” focuses on COPD and improving the uptake of pulmonary rehabilitation (PR) in all groups, with specific work with Black African, Caribbean, and Bangladeshi communities—groups historically underrepresented in clinical trials and disproportionately affected by COPD. This event was an exciting opportunity as we are the first research team to embed a novel EDI workstream in a clinical research study. It certainly sparked some interesting and meaningful conversations with our colleagues at the University of York.   Insights, challenges and changes We presented our work to research staff and students across the Department of Health Sciences, and the session was filled with engaging questions.   We started our presentation by briefly discussing the goals of UPTURN and the objectives of the EDI Workstream: to ensure that underrepresented populations are included in the study and that we work together to co-design an intervention that enables equitable access to and participation in PR. Our work isn’t just about increasing numbers but about building trust, co-designing a culturally relevant service, and addressing specific barriers that African, Caribbean, and Bangladeshi communities face when participating in research.   Historically, many clinical trials have lacked diversity, which limits the applicability of their findings to the wider population. Our team firmly believes that inclusivity isn't an afterthought—it's essential to producing robust, meaningful research and health outcomes.   After our presentations on trust, community engagement, diverse PPI groups, and our qualitative work with Bangladeshi patients and carers, we had breakout sessions to discuss what researchers found challenging about embedding EDI in their own work. Our second breakout session focused on what they had learnt from the UPTURN EDI Workstream and what actions they would take going forward. Here are some of the topics that we discussed.   GENERALISABILITY WOES: Excluding Marginalised Groups in Research Many participants felt that their previous studies had often overlooked diversity and inclusion. This sparked an interesting discussion on the validity of findings when marginalised groups are excluded. We emphasised the importance of working with community organisations and leaders to co-design recruitment strategies that are culturally appropriate, ensuring that research is truly representative and relevant to wider populations.   LOST IN TRANSLATION: Tackling Language Barriers in Research Language barriers were another hot topic, with many of our workshop participants recognising that questionnaires and consent forms were only available in English, which can deter participation from diverse groups. The conversation shifted to the challenges of translation—high costs, quality concerns, and resource constraints. The debate didn’t stop there, as we explored the pros and cons of using interpreters. We shared that our research had addressed these issues by having community researchers embedded in the team, who were representative of the groups with whom we planned to work and who could communicate effectively with the study participants.   Should All Trials Be Representative of the Population? An intriguing question was raised: should research represent the general population or just the group most impacted? Our response? It’s important to be able to justify our inclusion and exclusion criteria and ensure that we don’t exclude people inadvertently.     Ethnicity Reporting: It’s Not Just Black and White The conversation turned to how clinical research often gets ethnicity wrong. Participants flagged that the categories in research are often confusing and don’t reflect how people actually identify. Worse, linking ethnicity to causality can sometimes be misleading. Our conclusion is that culturally sensitive reporting is the only way forward.   Building trust and long-term relationships A key theme of the workshop was the importance of building long-term trust with underrepresented communities. Attendees highlighted the (understandable) deep-rooted mistrust in healthcare and research within Black and minority ethnic populations due to historical and contemporary mistreatment. Our team shared how we’re tackling this issue by working with trusted community leaders and organisations, maintaining transparency, and fostering open dialogue where concerns can be voiced. While it’s not always easy, we stressed that adapting study designs to meet community needs is essential for producing research that truly reflects and benefits everyone involved.   Making research accessible for People with Learning Difficulties.   Another poignant discussion emerged around how research processes can inadvertently exclude people with learning difficulties, particularly when they rely on family members for support. Several participants agreed that while people with learning difficulties often want to participate, the complexity of consent forms and study procedures creates significant barriers.   PPI: costing for meaningful involvement : Finally, we explored the role of Patient and Public Involvement (PPI) members on projects, especially in recruiting marginalised groups. While PPI contributors are crucial to conducting inclusive research – often the unsung heroes of research – sufficient resources aren’t always allocated in the funding process. Sometimes PPI members want to do more to support the research process but are limited by funds. The message was clear: a diverse PPI group is essential for successful research, and costs must be included for meaningful involvement!   REFLECTIONS ON THE ROAD AHEAD This session provided valuable insights into the complexities of embedding EDI in clinical trials but also highlighted the growing awareness around conducting more inclusive research. With funding bodies now requiring evidence of inclusivity in research proposals, the need for structured, well-supported approaches to EDI from design to dissemination has never been more important.   Feedback about the session Overall, the event turned out to be quite a success, with most participants sharing glowing feedback and rating it as "Very Good", while others rated it as "Good". Many attendees loved the "interactive format", especially the "breakout rooms", which encouraged lively smaller group discussions. One attendee said, "It was great to have the breakout rooms!" Another mentioned, "Discussing in smaller groups was really helpful, and hearing wider feedback was worthwhile." There was also praise for the seamless transitions between speakers and the relevance of the topics discussed.   While the feedback was overwhelmingly positive, participants also offered suggestions for improving future sessions. A few shared that they would appreciate longer sessions, with one noting, "It felt a bit rushed—we could have talked for hours!" Others were interested in the idea of "in-person events or a hybrid format" and expressed a desire for more time dedicated to breakout discussions. A few participants also emphasised the importance of framing the event as a "safe space" for sharing personal experiences and challenges related to EDI, which could encourage even more open conversation.   Wrapping up…. For us, the UPTURN EDI team, our very first training session, delivered by the whole team, has inspired us to run more EDI sessions in the future and continue sharing the lessons we learn along the way. We are excited to continue our work with underserved communities and hope that our efforts continue to shape more equitable research practices. As more funding bodies prioritise research inclusion, it's clear that the future of health research must be equitable.

Chronic Obstructive Pulmonary Disease (COPD) is a serious illness causing disabling breathlessness and limitation to daily activities. The illness is common and treatable, affecting people in communities throughout the UK.   UPTURN is a newly launched research programme aiming to make it easier for people living with COPD, to benefit from Pulmonary Rehabilitation - an effective treatment that supports management of the condition and better long-term health outcomes for those afflicted. UPTURN is a 5-year, £2.8m research programme funded by the National Institute for Health and Care Research (NIHR), and led by hospital consultant Dr Jonathan Fuld (Cambridge University Hospitals NHS Foundation Trust).   The “COPD and Me” UPTURN Community Engagement Assembly on 27th November brought together about 120 people including Bangladeshi community leaders, and their guests from Peterborough, London and Bedfordshire. Research Champions also attended from the Peterborough Community Voluntary Services with representatives from Black African, Black Caribbean, Chinese, Nepalese, Russian and LGBTQ + communities in the UK.   The evening of talks, discussion and networking, at the Cresset Theatre in Peterborough connected health researchers with community groups to understand how to work well together in research and to raise awareness of issues affecting people who live with lung disease. The event was hosted by   members of the Bangladeshi community and led by the UPTURN study’s Patient and Public Involvement leads, Tracy Cripps and Mir Abdul Gofur. Presentations were given by NHS England, Asthma + Lung UK, the West Ham United Foundation and Anglia Ruskin University. Guests were invited to share their experiences as patients and carers, and the impact of lung disease on their lives.   “It was a pleasure to take part in this event. We got a lot of information which was so useful for the improvement of our wellbeing and health. Brilliant organisation of the event, delicious food. I hope to take part in research.” Guest feedback   Researchers Dr Frances Early (Cambridge University Hospitals NHS Foundation Trust) and Dr Suman Prinjha (University of York) set out the aims and activities of UPTURN.   Pulmonary rehabilitation is a programme of exercise and education that can transform quality of life for people with COPD by reducing breathlessness and hospital admissions – but some people who are referred for pulmonary rehabilitation do not attend their appointment and so never get the benefit of the treatment. Some ethnic minority groups have higher rates of COPD than others but low attendance at pulmonary rehabilitation. There can be many reasons for this.   Working with patients from Bangladeshi and Black African and Caribbean communities, UPTURN will create a support package that can be personalised to help people attend their pulmonary rehabilitation appointment. The aim is to increase the number of people who attend their appointment regardless of their ethnicity or socio-economic level. The event was extremely well received. The UPTURN team really appreciated the time taken by community members, some of whom came from afar, and who gave feedback and advice about how we can work well together.   The team was also grateful to those who said they would be willing to take part in group discussions and interviews to help design the UPTURN support package. The package will be tested in the NHS in a large clinical trial involving around 1500 patients.   If you would like to hear about news, future activities and opportunities to take part in the UPTURN project, please join our mailing list .   The UPTURN team would like to thank the NIHR and the NIHR Cambridge Biomedical Research Centre for funding this event.   Funder statement: This study/project is funded by the National Institute for Health and Care Research (NIHR) Programme Grant for Applied Research (NIHR204401). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.