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On 13th February 2025, the Bangladesh Association and Community Project (BACP) organized a vibrant and impactful community health fair in Rochdale. Timed to coincide with Heart Month, the event brought together various health and care organizations, including LivingWell Rochdale, the Diabetic Eye Screening Programme, High Level (an addiction recovery support service), Rochdale District and Mind (a mental health service provider), Genes and Health Manchester, and MEASURE, among others. The UPTURN study also played a pivotal role in the success of this event. Rochdale Health Fair Flyer Our goal at this event was to raise awareness of the UPTURN project, COPD, and pulmonary rehabilitation (PR). The fair, which included the attendance of the Mayor of Rochdale,  had over 300 visitors and was covered by journalists from print and community media, ensuring that its outcomes were shared widely . The meticulous planning by BACP ensured broad participation from local healthcare providers and research organizations. Attendees had access to a wealth of resources, including health education materials, free health screening, and opportunities to discuss healthcare issues with experts. This holistic approach facilitated direct connections between residents and local health services, enhancing awareness of locally available care and support tailored to community needs. UPTURN at the Rochdale Health Fair The huge number of attendees from various backgrounds highlighted to us the importance of tailored interventions and how these are more likely to encourage diverse participation. Community researchers from UPTURN offered visitors health information about COPD. We displayed leaflets and flyers and were happy to answer any questions the visitors came up with. Many visitors expressed genuine interest in understanding how UPTURN will be addressing challenges faced by people with COPD and the innovative approach we are taking to help make PR more accessible. We had a sign-up sheet so that interested participants could jot down their contact details and receive updates. Seeing the joy and pride on the faces of community members on learning that the Community Researchers, who are members of the Bangladeshi community themselves, were making a concerted effort to promote health awareness across disadvantaged communities was one of the highlights of the day. The researchers’ efforts to raise awareness of PR in underserved communities, and to support the codesign of the UPTURN intervention, delighted visitors. They provided feedback, personal stories, and ideas that emphasized the significance of our effort. While the UPTURN community researchers were there to share their work, they also took the opportunity to explore other stalls and learn from the incredible initiatives being led by different organizations. It was inspiring to see so many groups working tirelessly to improve health awareness at the community level. The Community Researchers exchanged ideas, gathered feedback, and discussed potential collaborations, all of which help strengthen Patient and Public Involvement (PPI) endeavors. Rabbani speaking to an attendee Throughout the day, the Community Researchers mingled with people from diverse backgrounds and communities, all united by a common goal: to create a healthier, more equitable society. These interactions were enriching and a testament to the importance of building bridges across communities. The Community Researchers left the fair with a wealth of new connections, fresh perspectives, and a renewed sense of purpose. The Rochdale Pre-Ramadan Health Fair was a reminder of the incredible potential that lies within communities when they come together to support one another. UPTURN is proud to be part of this work, and the Community Researchers are now more motivated than ever to continue their work: guided by the feedback, stories, and aspirations of community members. Tahsin (left) and Rabbani (right) standing with the Mayor of Rochdale   Reducing Health Inequalities Community health fairs like this play a crucial role in addressing health inequalities, particularly within ethnic minority communities. By offering free health screening and educational resources, these events bridge gaps between the general public and the research community, promoting preventative care and empowering people to make informed health decisions. For example, the focus of the fair on respiratory health provided a platform for local residents to learn about COPD—a condition that disproportionately affects people from deprived and minority backgrounds. Many visitors shared their experiences, raising concerns about the challenges they face when accessing healthcare. These conversations help researchers and healthcare providers develop culturally appropriate interventions and services that are sensitive to the unique needs of ethnic minority communities. Moreover, the event highlighted the role of social determinants of health, such as housing conditions, language barriers, and socioeconomic status, which often contribute to disparities in healthcare outcomes. Community Engagement and Health Awareness Health fairs are not just about providing medical information—they also encourage a sense of community and shared responsibility for health and well-being. The Pre-Ramadan Health Fair highlighted how culturally relevant engagement strategies can increase participation and improve health literacy. By incorporating elements like henna, which holds cultural significance for many attendees, the event created an environment where visitors felt welcomed and respected, promoting a sense of community. Henna on hands The presence of mental health services, addiction recovery programs, and chronic disease management resources demonstrated the comprehensive approach of the organizers toward community well-being. This multidisciplinary approach ensured that attendees could address multiple aspects of their health in one setting. Summing up….. By providing opportunities for health screening, education, and direct engagement with healthcare providers, these events contribute to improving health literacy among local residents. They empower people to take proactive steps toward healthier lifestyles and foster collaboration between healthcare providers and community members. For ethnic minority communities, health events such as the Pre-Ramadan Health Fair in Rochdale, offer a crucial platform to address health inequalities and promote preventative care. Authors:  Dr M M Golam Rabbani and Tahsin Tabassum, Community Researchers at UPTURN, University of York, UK Acknowledgments: We are very grateful to Karen Glerum-Brooks, PPI and Stakeholder Engagement Manager, York Trials Unit, who invited us to attend the event and collaborate with her to share our work. We are also thankful to all the members of BACP who provided an incredible venue, a huge audience, excellent suggestions, and delicious food.

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

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

In October this year (2024) I took the big decision to undertake a PhD alongside my role as a Community Researcher on the 5-year NIHR-funded UPTURN study. It is early days but, so far, balancing the responsibilities of a full-time PhD programme and a research career has been an enriching and fulfilling experience for me.   As both my PhD and Equality, Diversity, and Inclusion (EDI) researcher roles are based at the University of York, working on them together is helping me grow professionally and giving me many more opportunities to make a meaningful impact on health equity in underserved communities. Overlapping interests between PhD and UPTURN research role My PhD research focuses on Severe Mental Illness (SMI) in South Asia, and specifically on modifying health risk behaviours (such as smoking, poor dietary patterns, irregular physical activity) and improving lifestyle outcomes for people often underrepresented in research. As an UPTURN EDI workstream researcher, I am exploring Chronic Obstructive Pulmonary Disease (COPD) and the uptake of pulmonary rehabilitation (PR) in Bangladeshi, African, and Caribbean communities across England. Although these topics might appear to be unrelated, they both focus on health disparities and systemic inequities—a common thread that highlights my dedication to improving health outcomes for marginalised communities.   Insights into South Asian Health Experiences Both my PhD and research role are enabling me to have a more comprehensive understanding of the challenges faced by South Asian populations when accessing healthcare – whether in England or in South Asia (Bangladesh, India and Pakistan). As a Bangladeshi researcher working with Bangladeshi communities in both England and Bangladesh, my cultural and linguistic skills and knowledge are proving invaluable. They help me create trust, connect meaningfully with communities, and ensure that the study findings are relevant. My lived experience also enables me to traverse complicated cultural nuances and helps me to contribute to developing more inclusive and impactful health solutions. My work on the UPTURN project is helping me learn more about culturally sensitive approaches to health promotion and interventions. My hands-on experience in this EDI role is also enabling me to better contextualise and address mental health inequalities in my PhD research. This bidirectional learning is increasing my awareness of cultural competency and its significance in research and practice.   Transferable Skills Balancing the demands of a PhD with a dynamic research post is providing me with a diverse set of transferable skills that go far beyond academia. Time management and prioritisation are two of the most important competencies that I have gained, allowing me to accomplish the goals of both professions so far while maintaining excellent work standards. In both roles, I am developing strong qualitative and quantitative research skills. From conducting interviews and focus groups to analysing massive datasets, I am developing a balanced understanding of these complementary methodologies. Furthermore, my ongoing experience of trial design and implementation is increasing my understanding of how research translates into practical, evidence-based interventions, a skill set that will be very useful in future work. Collaboration has become another key component of my development. Working in two large multidisciplinary teams is helping me understand different points of view, promote shared goals, and be part of two productive and inclusive research groups. This experience is teaching me the importance of adaptability, empathy, and clear communication in achieving collective goals. In terms of the so-called ‘soft skills’, I am working on and learning resilience, flexibility, and critical problem-solving. My dual professions are also increasing my emotional intelligence, particularly in understanding and responding to the needs of underprivileged groups. This is helping me to be me more sensitive to cultural differences and the importance of developing inclusive research programmes. The Research Environment The University of York provides a strong and supportive research environment, which is benefitting my career in many ways. I did my Master’s here and wanted to continue working at York afterwards. Its interdisciplinary approach, strong mentoring culture, and commitment to addressing global issues makes it an ideal setting for early career researchers like me. Having both my PhD and Community Researcher roles at the same institution is also enabling me to leverage shared resources, collaborate on various networks, and seamlessly transfer ideas from one to the other. Gratitude for Guidance and Support I credit much of my progress to the incredible mentorship and support that I have received. My PhD supervisors’ recommendations influenced my study direction and inspired me to think critically about the challenges of mental health in South Asia. Similarly, my line manager and coworkers on the UPTURN EDI workstream have been sources of inspiration and collaboration. Their dedication to addressing health disparities, as well as their encouragement, have made combining these responsibilities not only possible but also enjoyable. I appreciate the flexibility and understanding of both my PhD and EDI teams. The mutual acknowledgment of the difficulties of my two roles has resulted in a collaborative rather than competitive environment, each role supporting the other. Future Directions Reflecting on the start of my journey, I am grateful for the opportunities and support that are enabling me to grow personally and professionally. Balancing a PhD and a research career is difficult but also rewarding. The skills, insights, and experiences that I have gained already will continue to shape my approach to research going forward and my passion for health equity. Tahsin Tabassum, MBBS, MPH PhD Student, SCIMITAR EDI Researcher (UPTURN Study) Department of Health Sciences 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.

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.

We’d love to introduce you to our team. There are a few new faces around here! Introduction Four new Community Researchers joined the UPTURN team in April 2024, and are based at the University of York. The Researchers will be working on the 5-year NIHR-funded UPTURN study. The project focuses on Chronic Obstructive Pulmonary Disease, commonly referred to as COPD, which is a progressive lung disease that makes it hard to breathe. Each researcher will focus on community engagement and research activities, including gaining consent from participants taking part in the study, recruitment, conducting focus groups and interviews. Participants who are eligible will be invited to help co-design the UPTURN support package which aims to help COPD patients who have been referred to Pulmonary Rehabilitation. Dr. Ada Achinanya Dr. Ada Achinanya, a qualitative researcher, will be working with African communities. She has worked on a range of projects including fertility care, inflammatory bowel disease, and mental health. Ada’s experience spans capacity-building in low-middle-income countries, policy development with the Gambian Ministry of Health, and creating interventions for young people with chronic illnesses. In her previous role, she has collaborated with diverse groups, including African Caribbean-led social care providers, and explored the challenges faced by people with complex mental health difficulties in an NIHR study with Sheffield Health and Social Care. Ada said, “Joining the UPTURN-EDI Workstream Group to support Bangladeshi, Black African, and Caribbean communities to access pulmonary rehabilitation is a thrilling opportunity. I look forward to leveraging my background to identify barriers and develop effective solutions. As I often say, ‘People begin to heal the moment they feel heard’. I am excited to contribute to this important project and work with such a dedicated team. Together, we can make a real difference in the lives of those we aim to serve. Ada is devoted to murder mysteries and can recite every episode of Peter Falk’s Columbo. Aside from being a sleuth, she also enjoys baking and creates edible enchantment. Living in Sheffield you can be sure to catch Ada walking in the Peak District with her Labrador Ms Lorraine Lawrence Ms. Lorraine Lawrence will be working to recruit people from Caribbean communities. Lorraine has experience of working in community engagement and partnership building with Caribbean and African communities. As a Community Engagement Officer, Lorraine gained hands-on experience in managing Black Leaders Networks for three of Greater Manchester’s 10 localities, including Tameside, Bolton and Trafford. As part of her Researcher role, Lorraine was involved in engaging and recruiting participants from Black communities to focus groups. Lorraine is delighted to be part of the University of York’s UPTURN EDI research group to support Caribbean, African and Bangladeshi communities in accessing Pulmonary Rehabilitation. Being a mother to a 14 month old is undoubtedly a wonderful and fulfilling role, and finding time for hobbies like reading can be a challenge. However, Lorraine participates in an online book club as she finds it enriching to discuss books with others who share her passion, and to explore different interpretations and insights together. It also provides a valuable opportunity to connect with others and enjoy some well deserved relaxation time. M M Golam Rabbani M M Golam Rabbani (He/Him) is a researcher, filmmaker, and environmental activist of Bengali heritage. He earned his PhD in Environment and Geography from the University of York and has worked as a Postdoctoral Research Associate at Lancaster Environment Centre (LEC). His research has focused on climate change adaptation, disaster risk reduction in South Asia, and circular sanitation and science education in four African countries. Rabbani specialises in qualitative research methods, including interviews, photo-elicitation, focus groups and surveys, using NVivo, PQMethod and SPSS for data analysis. He is excited to join the UPTURN-EDI Research team to co-design and implement Rehabilitation Packages for COPD patients, aiming to engage with Bangladeshi, Black African, and Caribbean communities in England. When Rabbani is not filmmaking he finds joy in the kitchen and adventure on the road. Cooking allows him to explore flavours and cultures right from his home, while travelling gives him the chance to discover new ingredients, techniques and dishes to bring back to his own culinary creations. Whether he’s experimenting with a new recipe or planning his next getaway, he is always in pursuit of new experiences and tastes. Tahsin Tabbasum Tahsin Tasneem Tabassum is a public health professional from Bangladesh based in Leeds. After completing her medical studies, she undertook postgraduate degrees in Public Health from the Universities of York and Bangladesh,  and has a strong background in both clinical and preventive medicine. Tahsin has participated in mixed method health research projects on diverse topics including chronic diseases, COVID-19, geriatric mental health, and addiction behaviours. Tahsin has been involved in a number of projects, one of which focused on the caregiver burden of schizophrenia patients, and the other focusing on dietary compliance and physical activity compliance among patients with Severe Mental Illness. She has also received training in the Department of Psychiatry, which has given her the expertise to successfully navigate the challenging terrain of working with a plethora of populations from different demographics. Away from work Tahsin enjoys reading mystery and crime books, which draws her into the intellectual challenge of piecing together clues and solving puzzles, as well as being immersed in the suspense - which keeps her engaged. Dr Suman Prinjha Dr Suman Prinjha is a Senior Research Fellow (Associate Professor) at University of York. She is a qualitative researcher with over 20 years’ postdoctoral experience and a BACP-registered psychotherapist. She leads research into health inequalities, ethnic minority health, and patients’ experiences of illness and healthcare. Suman is Co-Investigator and EDI Workstream lead on the UPTURN study, leading work on the inclusion of Bangladeshi, Black African and Caribbean communities to all the work packages. She is delighted to be working with a fantastic team of Community Researchers on an exciting study that will generate important learning and impact for communities, researchers and funders.  When Suman isn't working, she likes switching off as much as she can and is a huge fan of meditation. She also enjoys travelling, eating out, and walking in the countryside. She has lived and worked in England, Thailand and South Korea, and is currently enjoying living in Bedfordshire. Participant Recruitment Flyers Community Researchers joined the University of York in April 2024, working on the 5-year UPTURN study. The project focuses on Chronic Obstructive Pulmonary Disease, commonly referred to as COPD, which is a progressive lung disease that makes it hard to breathe. For further information on COPD visit COPD (chronic obstructive pulmonary disease) | Asthma + Lung UK ( asthmaandlung.org.uk ) Researchers will work with people from a range of ethnic minorit y backgrounds, including those from Bangladeshi, Caribbean and African c ommunities to co- design  a support package for people living with COPD. Researchers aim to rais e awareness of COPD across commu nities ,  including sympt oms, treatments, cultural beliefs, access to healthcare, and lifestyle changes  that c ould  impact the prevalence and management of COPD. To find out more about the project see link UPTURN study | CUH

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.