Persistent and avoidable differences in lung health outcomes for people of Black heritage remain a significant challenge.
- People of Black heritage are 3.9x more likely to die of an asthma attack compared to people from white backgrounds
- Children from Black and ethnic minority backgrounds are more likely to be admitted to hospital for asthma (compared to children from White ethnic backgrounds)
- People from Black heritage (and other ethnic groups) are associated with increased risk of missed diagnosis for chronic lung conditions like COPD
Background + aims
People from Black communities are underrepresented in research
This is the result of complex interplay of biological, social, environmental, and structural factors. Many of these factors have not been explored deeply enough in current research or through existing public involvement initiatives.
The Equal Breath PSP's main aim is to work in close collaboration with members of Black communities and healthcare professionals to identify and prioritise unanswered research questions. By focusing on what matters most to people with lived experience, and the healthcare professionals who support them, this PSP will help guide the research agenda and inform funding decisions in a meaningful and impactful way.
To date, we are unaware of priority-setting initiatives in the UK that specifically address lung health disparities among Black populations – a gap this PSP seeks to address.
The Equal Breath PSP is jointly lead by Asthma + Lung UK and the Black in Biomedical Research Advisory Group and funded by the Medical Research Council.
Project timeline
The Equal Breath PSP will be announced on March 31st 2025 at the The Minoritised Life Scientists Future Forum (MLSFF).
The first survey will launch in the summer of 2025.
Analysis of first survey results will take place in the autumn of 2025.
The second survey will open in early 2026.
A workshop to determine the final set of priorities will take place in Spring 2026.
Final analysis and results will be published and disseminated from April 20206.
Administration
The Equal Breath PSP is being coordinated by:
- Professor Ade Adewale O Adebajo (Black in Biomedical Research Advisory Group and University of Sheffield) as the Strategic Lead
- Dr Sope Wolffs (Black in Biomedical Research Advisory Group and University of Sheffield) as the Co-Lead
- Anna Goodman (Asthma + Lung UK) as the Co-Lead
- Dr Melanie Etti (Black in Biomedical Research Advisory Group and University of Oxford) as par of the Strategic Team
- Priyanka Punja (Asthma + Lung UK) as the Project Coordinator
- Suzannah Kinsella (James Lind Alliance) as the JLA Advisor and Chair of the Steering Group
Meet the steering group:
I am a respiratory doctor in East London and clinical lecturer in clinical and communication skills at Queen Mary University. I wanted to get involved in the Equal Breath PSP as I see the effects of respiratory health inequalities in my clinical work and I want to be involved in making a change.
Curie is a multidisciplinary Creative and Lived Experience Practitioner who is interested in innovation in health care, new developments in medical science, health data and the use of AI in medicine as well as being really excited about what the future holds for biometrics.
I have comorbidities and lived experiences of Lung diseases and I am a survivor of TB.I hope that advances in this field will enable me to receive personalised treatment options in the near future or even a complete cure. I look forward to bringing a voice to the table and collaborating with the other members of the research team.
In my spare time I enjoy spending time with God, connecting with nature, yoga, sound baths, theatre, cinema, travelling and watching documentaries. I also care about the climate and I am passionate about social justice. I am a pescatarian.
I look forward to making a valuable contribution to this project by sharing my lived experience, contributing new ideas and insight to help shape, support and enrich the decision making process.
Debbie Duncan qualified as a registered general nurse with a BSC in Nursing in Scotland and then worked in a rural cottage hospital in Scotland and then commenced her midwifery training in 1991. She worked as a midwife until stepping into general practice in 1999.
Debbie has extensive experience in primary care where she worked as a General practice Nurse and then as an advanced nurse practitioner and prescriber. She specialised in the management of long-term conditions running triage services and outreach services for the homeless community for nearly 10 years. She is a member of the association of respiratory nurses – on their research and education committee. Her interest in respiratory nursing has led to the publication of a range of articles and a textbook for anyone working in the respiratory field. This was made free and accessible online during the Covid-19 pandemic.
She recently ran the respiratory pathways for specialist practice and was the lead respiratory nurse at Queens University Belfast. She is a senior lecturer in community nursing at the School of Health and Medical Sciences at City, St Georges University of London and Deputy lead of Primary care.
Hi, I’m Denise, a homemaker living with a lung disease. Through my journey navigating the health system, I’ve realised meaningful change happens when all voices are heard. That’s why I joined my local health neighbourhood panels—to gain personal insights, share experiences, and contribute to improving healthcare within my community.
Expert by experience in issues surrounding long term ventilation, tracheostomy and Chronic Lung Disease. I am a passionate advocate for neonatal families and believe maternity and neonatal care should operate with full equity. I have a strong interest in life after neonatal care and improving outcomes for premature babies.
I was diagnosed with asthma in my late teens following multiple hospital visits. Diagnosis took a long time and the care I received has been varied. As a result of my experience, I am interested in contributing to how diagnosis and follow-up care can be improved from a patient perspective. I work as a Trainee Psychologist.
Kate’s PhD identified and characterised patient experiences of treatment in lung cancer and Chronic Obstructive Pulmonary Disease.
Kate works at the University of Southampton, co-designing a person-centred intervention for people with multiple long-term conditions and as Knowledge Mobilisation Fellow for NIHR ARC Wessex. She also works as an NHS Fellow in primary care across the South-West.
Dr Kelechi Ugonna (BMedSci, MBChB, PhD) is a Consultant in Paediatric Sleep and Respiratory Medicine at Sheffield Children’s Hospital. With over 15 years’ experience as a consultant, in clinical care, research, and education, he is passionate about advancing child health, improving sleep and breathing outcomes, and fostering innovation through multidisciplinary collaboration.
Louise Hill Davis is a facilitator, educator, and poet specialising in inclusive practice across health and education. As a mother whose son experienced a serious respiratory illness in infancy, she understands how hard it can be. Louise is passionate about driving improvements and amplifying underrepresented voices in healthcare.
Michelle Peter is a social scientist and Head of Research at Global Child and Maternal Health - an organisation dedicated to tackling the disproportionate impact of air pollution on Black and marginalised communities. She is passionate about ensuring research priorities address the poor respiratory health outcomes faced by Black communities, where air pollution and poor air quality are key drivers.
I was diagnosed with asthma at the age of 14 after years of experiencing persistent wheezing, shortness of breath, and tightness in my chest at night. It took some time to receive a clear diagnosis, as my symptoms were often mistaken for other illnesses or a lie. Living with asthma has taught me how important it is to listen and understand patients experiences, especially when symptoms can be unpredictable or difficult to explain.
I am currently a first year Medical Imaging student at the University of Exeter with a growing interest in clinical research. As someone with lived experience of asthma, I am particularly passionate about contributing to projects that aim to improve understanding and care for respiratory conditions. Being a member of the Steering Group for this PSP research is a meaningful opportunity to support the development of patient-centred priorities that could shape future studies and enhance equality of life for people with lung and chest conditions.
I am a consultant paediatrician working at Sheffield Children’s hospital in South Yorkshire. In my practice I look after children and young people with various breathing related conditions. I recognise unique constraints in assessment and management of respiratory issues in children of black heritage which has prompted me to get involved with this PSP.
I am a General Practice Registrar based in London with a special interest in Global Health. I studied at Brighton and Sussex Medical School and since qualifying in 2019 I have worked with colleagues on academic research in Zambia, Kenya, Brazil and Tanzania on maternal and child health as well as emergency care. I have also worked alongside community groups in Oxford to raise awareness about Sickle Cell which inspired me to take part in the Equal Breath PSP.
I am a pharmacist and currently work in the national team community pharmacy policy and strategy team at NHS England. This includes supporting medicines optimisation and quality improvement in respiratory care for children aged 5-15 years. I am interested in research with a focus on improving health equity and reducing inequalities in access to healthcare. I also have a keen interest in cardiovascular disease prevention.
About the James Lind Alliance and Priority Setting Partnerships
The James Lind Alliance is a non-profit making initiative, established in 2004. It brings people with lived experiences, family, carers and health care professionals together in Priority Setting Partnerships (PSPs). These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to people with lived experiences, family, carers and health care professionals. The National Institute for Health and Care Research (NIHR) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Coordinating Centre (NIHRCC), University of Southampton.