What’s in a “research passport”? A collaborative autoethnography of institutional approvals in public involvement in research

Donald, Christine; Laterza, Vito; Evans, David; Davies, Rosemary; Donald, Chris; Rice, Cathy

Abstract

© 2016 Laterza et al. Background In the growing literature on public involvement in research (PIR), very few works analyse PIR organizational and institutional dimensions in depth. We explore the complex interactions of PIR with institutions and bureaucratic procedures, with a focus on the process of securing institutional permissions for members of the public (we refer to them as “research partners”) and academics involved in health research. Methods We employ a collaborative autoethnographic approach to describe the process of validating “research passports” required by UK NHS trusts, and the individual experiences of the authors who went through this journey– research partners and academics involved in a qualitative study of PIR across eight health sciences projects in England and Wales. Results Our findings show that research partners encountered many challenges, as the overall bureaucratic procedures and the emotional work required to deal with them proved burdensome. The effects were felt by the academics too who had to manage the whole process at an early stage of team building in the project. Our thematic discussion focuses on two additional themes: the emerging tensions around professionalisation of research partners, and the reflexive effects on PIR processes. Conclusions In the concluding section, we make a number of practical recommendations. Project teams should allow enough time to go through all the hurdles and steps required for institutional permissions, and should plan in advance for the right amount of time and capacity needed from project leaders and administrators. Our findings are a reminder that the bureaucratic and organisational structures involved in PIR can sometimes produce unanticipated and unwanted negative effects on research partners, hence affecting the overall quality and effectiveness of PIR. Our final recommendation to policy makers is to focus their efforts on making PIR bureaucracy more inclusive and ultimately more democratic.

• Journal Article Type: Article
• Acceptance Date: May 7, 2016
• Publication Date: Jun 22, 2016
• Deposit Date: Jun 13, 2016
• Publicly Available Date: Jun 23, 2016
• Journal: Research Involvement and Engagement
• Print ISSN: 2056-7529
• Electronic ISSN: 2056-7529
• Publisher: BioMed Central
• Peer Reviewed: Peer Reviewed
• Volume: 2
• Issue: 1
• DOI: https://doi.org/10.1186/s40900-016-0033-z
• Keywords: patient and public involvement, public involvement in research, autoethnography, complexity, empowerment, human resources, reflexivity, research relationships
• Public URL: https://uwe-repository.worktribe.com/output/920698
• Publisher URL: http://dx.doi.org/10.1186/s40900-016-0033-z
• Contract Date: Jun 23, 2016