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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.