Respiratory disease accounts for a significant proportion of health inequalities in the UK, relating to accessing healthcare as well as outcome measures. It is important that we undertake more research to better understand the barriers those with respiratory disease experience so that more targeted diagnosis and treatment pathways can be established.
There is a strong evidence base for the benefits of pulmonary rehabilitation (PR) and it is important that all those who are eligible for PR are referred. We know that there is work to do in order to improve equity of access.
Can you tell a little about what the UPTURN study is, and what its main objectives are?
I am really pleased to introduce this work. UPTURN is research study to co-design and evaluate a new intervention to increase UPTake of pUlmonary RehabilitatioN.
Just as a little background, we are funded by NIHR, sponsored by Cambridge University Hospital NHS Trust, and working in partnership with Asthma and Lung UK. We are an interdisciplinary team working across the University College London, University of Cambridge, University of York and University of East Anglia. We are at the first stages of this 5 year project.
We know that PR is a transformative treatment for people with chronic obstructive pulmonary disease (COPD). The first step in the PR pathway is the comprehensive, holistic assessment, yet many do not attend this assessment and attendance is less likely for those facing health inequalities, particularly those from minority ethnic backgrounds. We want to try and maximise engagement with this first step in the process. If we can design an intervention that increases attendance at assessments, then we feel confident attendance rates at subsequent PR programmes will increase.
How will co-design be woven into the methodology of the project?
Addressing inequities is at the centre of this research and we have a team of community researchers dedicated to engaging communities as our partners in the co-design process, together with healthcare professionals and other stakeholders. We want to involve as many patients and healthcare professionals as we can at this first stage. If we are to achieve our aim of developing tailored strategies, we need to understand more about what encourages people to attend and importantly what barriers to attendance people with COPD face and how to support healthcare professionals in referring to PR. We are beginning with discussion groups which will then be followed by a series of co-design workshops. We want to take time to get the methodology right and have the right people alongside us as we design the intervention. We will then move to a clinical trial phase, and ultimately hope to produce a sustainable PR pathway that can be adopted nationally.
How will addressing inequalities be considered as part of this study?
We know that attendance at PR assessment is a strong indicator of attending any subsequent PR programme, and we know that a third of people referred for assessment do not attend. We also know that a disproportionate number of those who are not attending are from deprived and ethnic minority groups.
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. Through our team of Community Researchers, we are working particularly with members of UK Bangladeshi, Black African and Caribbean communities. 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.
If people are interested in getting involved in the study, what opportunities are there, who would be suitable, and where can more information be found?
At present, in the first phase of the UPTURN study we are running focus groups with healthcare professionals (practice nurses, GPs, Respiratory physios, social prescribers, consultants) to discuss how we may support equitable access to PR, particularly amongst people from ethnic minority communities. The collective thoughts and experiences from these discussions will help shape in initial thoughts about the co-design of the UPTURN intervention
We are looking for healthcare colleagues who can spare 2 hours of their time to take part in an online discussion group (during June and July) about improving equitable access to PR services
In particular we would love to hear from:
- GPs
- Respiratory & practices nurses
- Respiratory Physiotherapists
- Respiratory consultants and trainees
- Other potential refers e.g. social prescribers
Particularly those supporting people of diverse ethnicities and/or interested in addressing inequities around PR attendance.
Those interested either email us directly via the contact details below, or register their interest on this short form and we will contact them: https://forms.office.com/e/WHbRxEkSCw .
If you are working in PR, either referring patients or delivering PR services please get in touch!
You can find more information about UPTURN here