Developing a typology of the roles public contributors undertake to establish legitimacy: A longitudinal case study of patient and public involvement in a health network

Barker, Jacqueline; Moule, Pam; Evans, David; Phillips, Wendy; Leggett, Nick

Abstract

Objective To identify how public contributors established their legitimacy in the functioning of a patient and public involvement programme at a health network. Design A longitudinal case study with three embedded units (projects) involving public contributors. Interviews (n=24), observations (n=27) and documentary data collection occurred over 16 months. Setting The West of England Academic Health Science Network (WEAHSN), 1 of 15 regional AHSNs in England. Participants Interviews were conducted with public contributors (n=5) and professionals (n=19) who were staff from the WEAHSN, its member organisations and its partners. Results Public contributors established their legitimacy by using nine distinct roles: (1) lived experience, as a patient or carer; (2) occupational knowledge, offering job-related expertise; (3) occupational skills, offering aptitude developed through employment; (4) patient advocate, promoting the interests of patients; (5) keeper of the public purse, encouraging wise spending; (6) intuitive public, piloting materials suitable for the general public; (7) fresh-eyed reviewer, critiquing materials; (8) critical friend, critiquing progress and proposing new initiatives and (9) boundary spanner, urging professionals to work across organisations. Individual public contributors occupied many, but not all, of the roles. Conclusions Lived experience is only one of nine distinct public contributor roles. The WEAHSN provided a benign context for the study because in a health network public contributors are one of many parties seeking to establish legitimacy through finding valuable roles. The nine roles can be organised into a typology according to whether the basis for legitimacy lies in: the public contributor's knowledge, skills and experience; citizenship through the aspiration to achieve a broad public good; or being an outsider. The typology shows how public contributors can be involved in work where lived experience appears to lack relevance: strategic decision making; research unconnected to particular conditions; or acute service delivery.

• Journal Article Type: Article
• Acceptance Date: Apr 20, 2020
• Online Publication Date: May 18, 2020
• Publication Date: May 18, 2020
• Deposit Date: Apr 21, 2020
• Publicly Available Date: Apr 21, 2020
• Journal: BMJ Open
• Electronic ISSN: 2044-6055
• Publisher: BMJ Publishing Group
• Peer Reviewed: Peer Reviewed
• Volume: 10
• Issue: 5
• DOI: https://doi.org/10.1136/bmjopen-2019-033370
• Public URL: https://uwe-repository.worktribe.com/output/5908467