Arthritis UK – Inclusive language for involvement

Last year, the research involvement team at Arthritis UK undertook a project to improve the diversity of the network, with a particular focus on increasing the representation of 18-40 year-olds, males, people with different types of arthritis, and people from a wider range of places. To identify barriers to involvement for these groups, the team organised workshops, interviews and surveys with their existing network to find out what was working well and what could be improved. 

They mapped out the stages of a research partner’s ‘journey’ with the network, using these as a framework to analyse the themes of the feedback: attraction and recruitment; welcoming and onboarding; training and development; shaping decision-making; communications; recognition of impact; and moving on from the network.

This analysis was then presented back to the network, with members asked to anonymously rank the collected ideas by importance to help the team to prioritise their next actions. At each step in the process, research partners were encouraged to be honest and creative in their input. Ultimately, the charity identified a lack of inclusivity and accessibility in its involvement webpages and resources as the main obstacle. 

The team reviewed the language of their web copy, network sign-up process and training materials, working together with research partners. They also sought advice and reviews from the organisation’s diversity and inclusion team, as well as the wider Arthritis UK patient community, to ensure that both current and prospective network members were able to have a say in the work. 

Other actions have included: 

• Being more proactive in communicating the experience of being a research partner, through blogs and stories, events, and a leaflet to build knowledge and interest. 

• Introducing payments to recognise the time and expertise given by network members.  

• The Arthritis UK diversity and inclusion team presenting and facilitating discussions at a network meeting. Since the meeting, research partners re-reviewed applications from researchers to make sure they had thought about health inequalities. 

• Having open conversations with the network and working hard to ensure everyone feels comfortable and is heard. The team have brought more diversity to events, committees, and funding panels and have received positive feedback from both people with arthritis and colleagues about the difference this has made.