UPTURN is a new 5-year, £2.8m research programme funded by the National Institute for Health and Care Research. The study aims to help people with Chronic Obstructive Pulmonary Disease (COPD) take up, and therefore benefit from, Pulmonary Rehabilitation (PR).
COPD is a common lung condition where air cannot get out of the lungs easily because the airflow is obstructed. In England around 80,000 people live with COPD, which causes breathlessness, a persistent cough, and wheezing.
PR is a treatment programme of exercise and education designed to help patients manage their symptoms and live well with the disease. We already know that PR leads to fewer admissions to hospital as well as a better quality of life for 90% of people who complete it.
Dr Jonathan Fuld, Clinical Lead East of England Respiratory network
Unfortunately, up to one third of COPD patients do not attend their initial PR assessment or fail to take up the programme, and therefore never get the benefit of the treatment. These are the issues UPTURN aims to address.
Some ethnic minority groups have higher rates of COPD than others and low attendance at PR assessment. There can be many reasons for this. The UPTURN study will work with patients from the Bangladeshi and Black African & Caribbean communities, their families, and health care professionals to co-design a support package that will work for all but with the ability to be tailored to answer patients’ specific questions and concerns about PR.
This support package, including personalised telephone advice with culturally sensitive information, will be tested in a clinical trial to find out if people receiving this support are more likely to take up and benefit from the PR programme compared to those who don’t. The support package will be delivered in local services across England by UPTURN’s charity partner Asthma and Lung UK.
The UPTURN team comprises researchers around the UK, including the Universities of Cambridge, Leicester, York and Birmingham, Norwich Clinical Trials Unit, UCL and King’s College London. Patient and public contributors, including representatives from ethnic minority communities, are central to the research team.
A key part of the programme will be building community relationships and focusing on what matters most to patients. The team will also work with community engagement researchers to help ensure that ethnic minority patients and carers are included in the study.
Many research interventions start with something that works for the majority of people, leaving minority groups behind or excluded. We will approach this differently by co-designing, from the start, with underserved communities who face the biggest challenges. This will create a support package that works for all. By taking this approach, UPTURN has the potential to provide health and wellbeing benefits, reduce health inequalities, while being good value for money for the NHS.
Dr Jonathan Fuld
