Lived Experience Co-Production Within the Alleviate Pain Data Hub

How are you feeling today?<br/><br/>People with lived experience of pain leading on the development and promotion of the UK National Pain Survey.<br/><br/>Background: Chronic Pain affects up to 28 million people in the UK. The aim of the Alleviate Pain Data Hub is to improve the visibility and accessibility of pain data, leading to improvements in patient quality of life.<br/><br/>The 2024 UK National Pain Survey was run by Alleviate, in collaboration with Pain UK, the Advanced Pain Discovery Platform (APDP) and Chronic Pain Australia. The survey was based on the annual National Pain Survey developed by Chronic Pain Australia and has been further revised for the UK pain community, based on feedback from the UK National Pain Survey 2023.<br/><br/>Methods: For 2024, we wanted to increase the number of survey returns and engage with a wider range of participants. Members of the Lived Experience Advisory Group discussed the invisibility of pain and the need to highlight how it really feels to live with pain. They developed the idea of the ‘My 3 Words’ campaign, publicised through a video campaign, with people living with pain sharing their ‘My 3 Words’. People living with pain were encouraged to share the 3 words which best describe how they are feeling. We received 243 words in 7 different languages.<br/><br/>Outcomes: Response to the survey almost doubled between 2023 and 2024, with 1,134 submissions from across the UK.