Res Involv Engagem. 2023 Dec 6;9(1):112. doi: 10.1186/s40900-023-00522-6.

ABSTRACT

BACKGROUND: The use of participatory research approaches in the field of dementia and forensic mental health research has been on the rise. Advisory board structures, involving people with lived experience (PWLE), have frequently been used for guiding and leading research. Yet, there has been limited guidance on the establishment, retention and use of advisory boards in the field of dementia and forensic mental health research.

OBJECTIVE: This project outlined in this research protocol will investigate the benefits and challenges of establishing three patient advisory boards, involving PWLE, practitioners and researchers with the purpose to guide research. Data will be used to develop guidelines for best practice in involving PWLE in dementia and forensic mental health research through advisory boards.

METHODS: The research project will be divided into three phases: Phase I will involve two topic-specific systematic reviews on the use of participatory research with PWLE, followed by an initial study exploring PWLE’s, practitioners’ and researchers’ expectations on research involvement. Phase II will consist of the establishment of three advisory boards, one focusing on dementia, one on forensic mental health and one overarching coordinating advisory board, which will involve PWLE from both fields. Phase III, will consist of interviews and focus groups with advisory board members, exploring any challenges and benefits of involving PWLE and practitioners in advisory boards for guiding research. To capture the impact of involving PWLE in different research phases and tasks, interviews and focus groups will be conducted at four different points of time (0, 6, 12, 18 months). Reflexive thematic analysis will be used for the analysis of data.

DISCUSSION: The project aims to explore the involvement of PWLE and practitioners in guiding research and aims to develop guidelines for best practice in establishing and using patient advisory boards in dementia and forensic mental health research and involving PWLE and practitioners in research.

PMID:38057888 | DOI:10.1186/s40900-023-00522-6