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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.

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.