‘I felt part of the solution’. A qualitative study about the interface between lived experience advocates, professionals and organisations in the field of persistent pain

Objectives To elicit perspectives of people with persistent pain about their experiences working with pain management professionals and services as patient advocates and to consider implications for current models of involving patients in service development and research. Design reflexive thematic analysis from a critical realist perspective. Methods Online interviews were conducted individually with 10 participants who had acted as patient advocates in the field of persistent pain. Participants were recruited through purposive and snowball sampling. Data were analysed and organised into themes and are presented descriptively. Results The relationship between patient advocates and the organisations they help is conceptualised as ‘an unequal partnership’. Participants described positive and affirming experiences with individual health professionals and research teams (Respect). This often occurred within a context of inflexible organisational policies that presented barriers to participation including a lack of financial compensation and expectation to work to inflexible deadlines. As a result, patient advocates could experience a lack of value attributed to their experiences and voices (unmet needs from institutions). Conclusion People with personal experience of engaging with services for persistent pain are in a strong position to contribute to service improvement. Although this contribution is recognised as valuable, it appears to be devalued by organisational barriers. Organisational policies around payment may lead to a lack of representation of those experiencing higher levels of disadvantage. As a result, services and policy makers may be missing out on insights that could be important for service development.