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Box 2 Case study - #DesignforMSK [26] and YourRheum [9, 27]

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

What we did
In 2016, #DesignforMSK involved people and patients in a creative exploration of the issues faced every day by young patients (16-26 years). Through a patient-led co-design process, the project developed and exhibited design solutions for new, covetable products supporting patients living with musculoskeletal conditions.
#DesignforMSK and YourRheum demonstrate our ‘cycle’ of engagement and involvement by co-creating, in 3 creative workshops in Manchester, comprising 25 people (young patients, creatives and researchers), 8 product prototypes. Amplification of the outputs came through a physical exhibition at Manchester Art Gallery in December 2016, which also featured artwork created in response to living with invisible disabilities. A digital version of the exhibition was screened at the Museum of Science and Industry in February 2017, broadcast on CMFTV across the hospital campus in early 2017, and digitally engaged audiences through social media reaching over 60,000 people (to February 2017). The project led to the establishment of Your Rheum, a national group for people aged 11 – 24 to advise, input and shape current adolescent and young adult rheumatology research.
The evaluation of the project reports findings across the success criteria associated with implementation of the ‘cycle’.
Young people involved in the project report increased personal confidence and agency within research
The emotional and social impact of #DesignforMSK is evident in responses from the young participants, many of whom reported having never met another person their age with similar conditions to their own:
I think it’s given us the opportunity to not feel so abnormal in this world’ [Young participant 1]
After participating in the workshops I now feel I’m not alone and I am glad I can provide support to others’ [Young participant 2]
‘It’s great to be able to speak to people that know what the condition is like and who understand the struggles I have. This has boosted my confidence and I certainly feel less alone now’ [Young participant 1]
#DesignforMSK also inspired participants to make a transition from engagement, to pursuing their own involvement in research. Four of the young participants have gone on to become involved with Your Rheum, a national group for people aged 11 – 24 to advise, input and shape current adolescent and young adult rheumatology research. Three of these participants had not been involved in any similar projects prior to #DesignforMSK, and found out about the opportunity directly through being engaged in #DesignforMSK.
Many conversations during the workshops were about a desire to raise awareness of invisible illnesses and hidden disabilities. Taking part in #DesignforMSK made the participants aware that there are opportunities to become involved in research and affect change. This, and their subsequent involvement in Your Rheum, has motivated the young participants to help others and seek out ways to raise awareness about their condition, research, and having a voice in research:
‘I think it’s inspired me to help other people; not just people with our conditions, but anyone with any form of disability’ [Young participant 1]
‘I would like the opportunity for not only Your Rheum members but for all young people with rheumatic conditions to be able to participate in research and to be a lot more informed in how our contribution to research helps’ [Young participant 3]
#DesignforMSK raised awareness of musculoskeletal conditions and research amongst public audiences
A major aim of the exhibition was to raise awareness of the fact that arthritis is a condition which affects young people and to raise the profile of this invisible illness and research into it.
After visiting the exhibition, as assessed through surveys, and word associations, people associated the word ‘elderly’ with arthritis 50% less than before the exhibition; people also felt that arthritis and musculoskeletal conditions were ‘relatable’ after visiting the exhibition. The frequency of use of the words ‘pain’ and ‘debilitating’ decreased after visitors had seen the exhibition, while ‘brave’ and ‘strong’ increased. Survey responses also indicated that the exhibition was successful in its aim of raising awareness of musculoskeletal conditions being something that can affect young people as well as old. It is clear that the exhibition also had a positive impact on people’s understanding of musculoskeletal conditions, making them more relatable to visitors.
The project had an impressive social medial presence, reaching over 60,000 people.
Creative partners reported greater awareness of health conditions on their practice
Designers and curators involved in the project all reported an impact on their ways of working and thinking:
‘The workshops affected my personal thinking, as I’ve been able to meet people my age who have these conditions, which really touched me and helped me to understand these illnesses and see people in a different way ...’ [Curator]
‘From now on, disabled access to exhibition spaces will be a priority for me’ [Curator]
‘Going forward I will always think about how small changes to my designs could make them more readily available to everyone’ [Designer]
‘I found the workshops gave me much-needed perspective into the experiences of young people with musculoskeletal disorders … I could not help reflecting on how much we take for granted and what it takes for young people with musculoskeletal disorders to engage with society’ [Designer]
Researchers report learning from the project and valued the different perspectives encountered
Researchers feedback immediately after the workshops indicated the value of being able to have conversations with people who have musculoskeletal conditions outside of a clinical environment:
‘It became clear from the [conversations and activities during the workshop] that their disease affected many aspects of their daily life, but that there was limited information or tools available to help them overcome some of these problems. For us as researchers it was very interesting to listen to all these stories and to go away with possible ideas for future research’ [Musculoskeletal Researcher 1]
‘I came to get an idea of what MSK was, the symptoms and what is currently being done to help patients from a research and treatment point of view. It did give me some answers and also got me thinking about potential research and treatment possibilities.’ [Psychology Researcher]
‘I am currently thinking about doing some research on employment including young adults with Juvenile Idiopathic Arthritis. This workshop emphasised that there is lack of information and [that] people with musculoskeletal diseases encounter various problems during their vocational training and finding their first job.’ [Senior Research Fellow]
‘I also noticed that some of the participants had become friends and they were able to share their ideas and problems which was something I had not thought of as one of the outcomes of the project.’ [Senior Research Fellow]
A challenge for the project was researcher recruitment and drop out. Despite this, the young participants enjoyed working with the researchers, although they would have liked to have had more researcher involvement with the project:
‘I think it’s fantastic having the chance to work with researchers, and it should be something to aim towards for the future as it gives insight to both participants and researchers about the difficulties we each face’ [Young Participant]
This last point has informed our practice going forward: future projects may benefit from encouraging online discussion between researchers and patients in order to facilitate engagement and to maintain the researcher’s involvement even if they are unable to attend face-to-face meetings; and clear communication about a project’s aims and potential outcomes.
The Research Advisory Group YourRheum continues to thrive.