From experience to empowerment: the impact of being an experts-by-experience in the social domain

Abstract Background Residents in vulnerable neighborhoods face economic hardship, health inequalities, and social exclusion. Despite these communities’ pressing needs, they are frequently inaccessible to professionals and policymakers. Engaging experts-by-experience-residents who use their lived experience to support others-offers a promising way to bridge this gap. Although this approach is increasingly popular, little is known about its impact, especially on the experts themselves. This is explored in this study. Methods Using Participatory Action Research with a qualitative, exploratory design, we conducted a document analysis, interviews with experts-by-experience and professionals guiding them (n = 7), and observations of group meetings (n = 8) in a Dutch city. Participants included various types of experts-by-experience, ranging from professionals with experiential knowledge to those still in vulnerable situations themselves. Data were analyzed using reflexive thematic analysis. Results The work of experts-by-experience is diverse. For example, they help citizens interpret official letters, offer information about the school system, and provide feedback for professionals developing new programs. Their work and training result in increased confidence, skill development, and access to education or employment opportunities. In turn, this can lead to positive changes in their own (previously) marginalized situations. For example, an expert-by-experience entered the formal labor market through working as an expert-by-experience. However, they also face challenges, such as the impact of financial compensation on the social benefits received by experts-by-experience. Conclusions Experts-by-experience not only supported others, but their involvement often marks a step forward in their own personal and professional growth. To sustain this impact, proper support, financial clarity, and attention to individual needs are essential. Key messages • Experts-by-experience experience fulfilment, recognition, and personal growth - such as increased confidence, skill development, and access to education or employment opportunities. • Support structures and clear financial policies are vital to sustain and scale the role of experts-by-experience.