Knowledge, evidence, expertise? The epistemics of experience in contemporary healthcare

Abstract

This paper explores how personal experience acquires the status of knowledge and/or evidence in contemporary healthcare contexts that emphasise being both patient-centred and evidence-based. Drawing on a comparative analysis of three case studies ‐ self-help and mutual aid groups; online patient activism; and patient feedback in healthcare service delivery ‐ we foreground: a) the role that different technologies and temporalities play in how experience is turned (or fails to be turned) into knowledge or evidence; b) the role that experts-of-experience, in addition to the more frequently referenced experts-by-experience, play in mediating how, when and why experience is turned into an epistemic resource; and finally, c) how the need to be ‘evidence-based’ remains a persistent, yet at times productive, challenge to how patient and user experiences are incorporated in contemporary healthcare policy and practice. Throughout the paper, we argue that it is necessary to look at both democratic and epistemic imperatives for including patient and service users in healthcare services and policymaking based on their experience.

Perspectives of experts-by-experience: an exploration of lived experience involvement in social work education

“…We have undertaken a qualitative study with the six core experts to discuss their involvement in social work education, addressing what motivated them to become involved, what the benefits of participation are, and the enablers and barriers to effective involvement. We considered the importance of the process of involvement (Unwin et al, 2018) from the perspective of people with lived experience of using services; a gap highlighted in the literature (Hughes, 2017;Mazanderani et al, 2020).…”

“…This is a voice is often less heard in social work education when compared to the academic or student viewpoint; and is central for social workers to hear as they begin to build effective relationships with service users. Moreover, Mazanderani et al (2020) highlight the contribution that experts-of-experience can make to the development of evidencebased practice, underlining the significance of their voice in generating theory for practice.…”

“…Fox (2011) similarly reflects on how she was empowered by describing her own journey of recovery and hoped that these accounts would positively influence service improvement in mental health. This is echoed in the experiences of many user involvement experts as they seek to change practice (Goldberg et al, 2020;Mazanderani et al, 2020).…”

“…155-156) Increasingly, service users are involved in mental health research, (Pinfold et al, 2015), and have a long history of participating, designing and influencing services (Rose et al, 1998). The experiences and perspectives of people with lived experience is of growing importance in all health and social care contexts (Fox, 2016;Goldberg et al, 2020;Mazanderani et al, 2020).…”

Professionals’ views on children’s service user involvement

“…As the interviewees saw it, work with children is sensitive and it requires situational knowledge and careful reasoning. For them, children's service user involvement is not a one-size-fits-all approach but a contextually embedded process (also Mazanderani et al, 2020).…”