As part of this year's Pulmonary Rehabilitation Awareness Week, we had the pleasure of hearing from Sara Langston from Asthma & Lung UK about a fantastic project – UPTURN – aimed at improving access to pulmonary rehabilitation (PR) for minority communities. Sara shares the reasoning behind the project, the progress made so far, and what lies ahead.

What brought the need for this project to your attention?

In England, around 80,000 people live with COPD, which causes breathlessness, a persistent cough, and wheezing. Pulmonary Rehabilitation (PR) is a treatment for people with Chronic Obstructive Pulmonary Disease (COPD). It involves supervised exercise and education to help manage symptoms. Before starting PR, patients undergo an assessment to determine their suitability for the programme and to tailor their treatment. Attending this assessment is a strong indicator that they will continue with the PR programme.

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 benefit from the treatment. UPTURN aims to address these issues by co-designing a support package in partnership with healthcare professionals, people living with COPD, and their families.

Some ethnic minority groups have higher rates of COPD and lower attendance at PR assessments. There can be many reasons for this. The UPTURN study will begin by working with people living with COPD from Bangladeshi and African and Caribbean communities, and their families, to understand their specific questions and concerns about PR.

What research was undertaken and what were the results?

We aim to design an intervention to support engagement with PR for all people living with COPD, with a particular focus on the needs of minoritised ethnic groups. The UPTURN intervention specifically targets the period post-referral and before PR assessment.

In the first phase, we are co-designing the intervention. It will then undergo feasibility testing and be evaluated in a clinical trial.

Interviews and Focus Groups

We held online focus groups with 31 healthcare professionals to discuss the challenges they face in supporting patients from minoritised ethnic groups to attend PR. These interactive sessions included discussions and breakout group activities.

We also conducted interviews and focus groups with people living with COPD and their carers from Bangladeshi, Black African, and Caribbean communities. We made a concerted effort to engage individuals who might not typically participate in research, providing translators when needed. Interviews were conducted online, in people’s homes, and on university premises. To date, 17 patients and carers have participated.

Co-Design Process

Definition of Co-Design: Bringing together lived experience and professional expertise to work in equal partnership to develop a defined service or product using a specified participatory, design-led process.

The service is being developed through three co-design workshops, with engagement and user testing in between.

Workshop 1

Date: November 2024
Location: Community venue in London
Duration: 3 hours (including 45 minutes for lunch and socialising)
Attendees: 22

• 6 representatives from Asthma + Lung UK
• 5 healthcare professionals (including physiotherapists and a respiratory nurse)
• 1 representative from an organisation supporting people with long-term health conditions
• 3 people with lived experience of COPD
• 4 community researchers
• 4 facilitators from the UPTURN research team

Goal: Generate ideas to support people in attending their PR assessment.

Activities:

• Brainstorming: Each table explored ideas to increase confidence in PR and remove practical and cultural barriers. Using sticky notes, participants proposed ideas ranging from community-led promotion to tech-based solutions.
• Dot Voting: Green dots highlighted top ideas; blue dots indicated secondary concepts.
• Storytelling: Participants used personas based on research data to explore how ideas could impact different patient journeys.

Outcome: A rich array of ideas and insights, which Asthma + Lung UK explored further using the APEASE criteria and the Engineering Better Care framework.

Between Workshops 1 and 2, user testing was conducted with people with COPD, community members, and healthcare professionals to refine mock-ups and prototypes.

Workshop 2

Date: April 2025
Location: UCL, London
Duration: 3 hours (including 45 minutes for lunch and socialising)
Attendees: 26

• 6 representatives from Asthma + Lung UK
• 5 healthcare professionals
• 1 representative from a long-term health support organisation
• 5 people with lived experience of COPD
• 4 community researchers
• 5 facilitators from the UPTURN research team

Goal: Explore the proposed service outline and develop further detail.

Activities:

• Thinking Hats: Participants discussed the service from three perspectives:
• Yellow Hat: Positives and benefits
• Grey Hat: Concerns and risks
• Green Hat: Opportunities for improvement
• Component Detailing: Each table explored one part of the service in depth.

Outcome: Clear guidance on how to develop the service further.

From now until Workshop 3 in July 2025, Asthma + Lung UK will begin building the service, supported by continued user testing.

What will the service look like?

• Welcome Pack: Includes a personalised letter and a booklet tailored to the patient’s language and accessibility needs.
• Online Resources: Videos explaining PR and culturally tailored testimonials for Bangladeshi and Caribbean communities.
• Helpline Support: Patients can book a call with Asthma + Lung UK’s helpline for personalised advice and support.
• Proactive Outreach: Special attention to patients with access needs or those digitally excluded, especially those at the intersection of ethnicity and deprivation.
• Behavioural Support: Phone calls enhanced with behaviour change techniques from UCL’s Centre for Behaviour Change to boost motivation and confidence.

Asthma + Lung UK’s helpline already supports thousands of people monthly, offering confidential advice via voice call, Text Relay, and interpreters.

Next Steps

• Build and deliver the service with ongoing community input.
• Feasibility Trial: ~40 patients over 3 months.
• Clinical Trial: ~1500 patients over 18 months.
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The project is funded by NIHR. The UPTURN team comprises researchers from various UK institutions, including the Cambridge University Hospitals NHS Trust (sponsor), Universities of Cambridge, Leicester, York, Norwich Clinical Trials Unit, University College London and King’s College London

Thank-you to Sarah and her team for sharing their work so far on the UPTURN project and how they are working to improve ability to access pulmonary rehabilitation for patients!

Keep up to date with our other PR awareness week resources on our PRSAS website and Twitter/X.

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