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Box 3 Case study - Summary of #BreathtakingLungs [21]

From: Innovating public engagement and patient involvement through strategic collaboration and practice

What we did
#BreathtakingLungs [Additional file 1 & 20] took a place-based approach to exemplifying and testing our ‘cycle’ of engagement and involvement. Wythenshawe in Greater Manchester has the largest clinical respiratory department in the UK. The surrounding areas also have significantly higher rates of respiratory conditions than nationally and a poor health profile, according to the Manchester City Council Neighbourhood Profile.
Over a 6 month period in 2018, 16 people with lived experience of respiratory conditions and living in Wythenshawe, researchers, an artist, community workers and the Public Programmes Team co-created a range of engagement outputs including:
• Singing workshops: 15 people with breathing conditions met every week to sing, carry out practical breathing exercises, and discuss research with researchers who also took part in the singing,
• Harmonica sessions: accessible sessions run in libraries and community locations, including content on respiratory conditions and research,
• A youth project working with 15 young people using graffiti and focused on air pollution (Wythenshawe is close to Manchester airport), creating a powerful mural,
• A fully functioning lung model, particularly popular with children and families,
• Breathing Blue: an immersive artistic response, featuring local people’s stories and voices, raising awareness of lung conditions and research. The wearable sculptures engaged audiences in out-patient centres, town centre and community location.
The ‘core’ partnership group engaged 127 people in 29 activities about breathing, breathlessness and research. The amplification phase of the ‘cycle’ came through further Wythenshawe community events engaging approximately 550 people. Further amplification came through social media, reaching over 99,940 Twitter accounts in the recorded period, media appearances on local and regional radio and TV, and touring Breathing Blue at the Manchester Science Festival, and other engagement and cultural events. Several of the project participants have taken steps to active participation and involvement in research, closing the ‘cycle’.
The evaluation of the project reports findings across the success criteria associated with implementation of the ‘cycle’.
Participants report reduced social isolation and positive health outcomes
Participants in the co-creation groups reported how the project and its activities had ‘got them out’. They reported that prior to Breathtaking Lungs they did not always leave their house regularly. People who took part in the wider project activities talked of the benefits of being part of a group and improvements in their capacity to manage their illness, both through interactions with health and research professionals, and through learning from other participants.
‘We’ve done art, we have done mouth organs, we sing, in fact for me the last six weeks have been a new start of life for me.’ [Participant 1]
‘It’s helped me breathe better and I love it.’ [Participant 2]
They also reported improvements in self-esteem, from a sense of achievement of developing a new skill (eg. Singing or harmonica playing) and improvements in physical strength. These findings are especially pertinent when considering the health profile of the area.
Communities and families report greater awareness of research and research involvement
Many of the people reached by the project reported positive perceptions of research feeling that it was needed, that the benefits to future population were ‘enormous’ and that therefore it was important to consider volunteering as a research participant. People reported that the project had increased their awareness of lung health and lung research. They also reported sharing this knowledge and awareness with family and friends, and that it may have helped them to explain their conditions to loved ones. The range of age groups involved in Breathtaking Lungs meant that it was easy for older and young members of the same family to be involved in the project.
‘And bringing my granddaughter in as well, that made it doubly good.’ [Participant 3]
The group also talked very positively about the role of the Clean Air Day event ran at Wythenshawe Forum on raising awareness of lung health locally. They felt that it played an important role in increasing people’s curiosity about and awareness of lung health and that the event had been beneficial locally in term of raising awareness of lung health (the availability of lung health testing was considered to be particularly important).
The creative and informal format of the engagement sessions and activities was especially valued by the people taking part:
‘The best thing about playing today, it was informative, it helped with the breathing but it was good fun and I really, really enjoyed it.’ [Participant 3]
‘I loved the sense of friendliness and I loved the information and access I had.’ [Participant 5]
People reached by the Breathtaking Lungs project have since gone on to become involved in respiratory patient panels and providing written feedback on research proposals and information documents, further events run by the Public Programmes Team, the VoiceUp Youth Research Advisory Group run by the Public Programmes Team and participating in research studies. Two people are now also currently involved in helping develop the pilot ‘Breathe Better’ drop-in support sessions with the NHS Community Respiratory Teams.
Researchers valued creative conversations
People reached by Breathtaking Lungs valued contact with researchers and would have welcomed more opportunities to talk with researchers:
‘We actually even met Professor Vestbo who’s the Professor at Wythenshawe Hospital doing research and he actually put himself on the hot seat and had us fire these questions and he was absolutely amazing.’ [Participant 2]
Researchers valued the ‘open and honest conversations’ brokered by the project, as did the participants, who particularly appreciated the care taken by the Public Programmes Team to create formats that ‘levelled the playing field’ between researchers and public and patient audiences, having relaxed and informative conversations, different to the ones they might have in clinic:
‘I liked that everyone wasn’t afraid to express their opinion.’ [Participant 4]
The project developed a number of engagement outputs which continue to be used by the researchers involved in Breathtaking Lungs and the Public Programmes Team.