How lived experience can inform and direct pain projects: Alleviate Pain Data Hub as a case study

BACKGROUND: Chronic pain affects a large proportion of the general population – at least 34% of adults in the UK - and it has a huge impact on people’s lives as well as the workplace and health services, accounting for more than 75% of the years lived with disability. Despite this, chronic pain is poorly captured in clinical data which makes it difficult to identify appropriate patient cohorts especially for retrospective observational studies. A different model for pain-related projects is to include the patient voice directly into the team with the addition of funded patient members. Here we present our positive experiences from within the Alleviate Pain Data Hub.
AIMS: To demonstrate how the patient voice is an intrinsic part of chronic pain research through the experience of the Alleviate Pain Data Hub and its pain community. To highlight the lived experience of people with chronic pain to inform the project and to respond to important issues.
METHODS: Throughout the lifetime of the Alleviate project two patient representatives have been included as part of the core project team. Using their input, alongside the input of a wider Chronic Pain Advisory Group, a continuous theme of outputs was generated to inform current and future research. For example, in 2023, a chronic pain survey based on a set of questions developed and used by Chronic Pain Australia (CPA) in 2023 was adapted for the UK population. Ethics approval was gained by the University of Dundee, School of Medicine ethics committee. The survey was open for a month between 16th November – 15th December 2023 and was shared via social media by the Alleviate Data Hub, the Advanced Pain Discovery Platform (APDP), Pain UK and HDR UK, plus direct contact was made with various large organisations, trade unions and charities. The survey was open to all adults across the UK.
RESULTS: The patient members of the team have been included throughout the project lifecycle and have been instrumental in delivering several of Alleviate’s outputs. Together with a public/patient involvement and engagement (PPIE) coordinator the patient members developed a recruitment strategy for the Alleviate pain community which includes 336 individuals. From this pool we recruited a panel of pain forum members who join in regular project meetings, PPIE specific events and have contributed to the direction taken in Alleviate. This includes the initiation of a collaboration between Alleviate, APDP, Pain UK and CPA on the reuse of the Australian survey in the UK. The questions covered general demographics of the participants and covered topics around an individual’s experience with pain and subsequent contact with health professionals, what research topics are important, and their emotional experiences relating to chronic pain research. 623 responses from across the UK four nations were received with a dominance of people living in England (71%), female (80%), with a median age of 53 and 9% from an ethnic minority background. Some key responses were that 75% of respondents felt ignored or dismissed by healthcare services and upto 44% were stigmatised by GPs or other health professionals. Further analysis will be presented covering aspects of the patient journey, management of their pain and views on most important research topics.
CONCLUSIONS: Being able to include the knowledge and experience of those living with pain and act on their needs and/or requests highlighted how impactful partner patient partners can be. The patient voice is a powerful director and motivator within Alleviate which has instigated several activities that would not have otherwise occurred: 1) raised the importance of chronic pain; 2) produced instructive materials for the public and researchers; and 3) instigated new collaborations.