Patient and public involvement in secure mental health research : setting-specific considerations and a protocol for involvement in the CORAS study (COllaborative Risk ASsessment and management)

Abstract

BACKGROUND: Patient and Public Involvement and Engagement (PPIE) is important in secure psychiatric research because it can help ensure that research is relevant and meaningful, and a positive experience for those participating. However, there are significant challenges to embedding PPIE in research in secure hospital settings, including practical barriers to involvement. A lack of reporting of PPIE practices makes it harder for researchers to learn from previous projects, leading to missed opportunities to improve PPIE in secure settings, and there are no current setting-specific guidelines for best practice. The CORAS study aims to examine collaborative risk assessment within secure psychiatric settings. In this study, PPIE is fully integrated throughout the research cycle, and this protocol describes the PPIE methodology being adopted. By highlighting these approaches and principles, this protocol is intended to be used as a transferrable framework for developing best practice for PPIE in research in these settings. METHOD: This protocol describes the ways in which we will ensure that PPIE remains central to each stage of the research project, from the formation of a smaller grant application PPIE group, through to dissemination of outputs. We discuss principles of recruitment into the PPIE group, ensuring that all areas of the secure mental health pathway are represented, and formally embracing equality, diversity and inclusion principles through the use of an Equality Impact Assessment. We also describe the core activities of the PPIE group, including the co-design of the research materials, recruitment strategies and dissemination plans, how the impact of PPIE will be examined, and practical elements such as around reimbursement and ensuring the wellbeing of PPIE group members. CONCLUSIONS: PPIE in secure mental health service research is important and challenging. This protocol outlines how we will address these challenges and ensure that PPIE is fully embedded in the design and delivery of a large study in secure settings. Although the prospective nature of this protocol precludes the sharing of outcomes and learning from the PPIE, it can nevertheless serve as a transferrable framework for the development that is urgently required in this clinical research field, as well as allow transparent future reporting of what was achieved. Involving people with their own lived experience in the design and running of clinical research studies can improve the quality and impact of these studies, as well as the experience for people taking part in them. In some clinical settings this involvement might be more difficult. In secure psychiatric hospitals things like security can make it difficult for people to be involved in this way in research. There is not much guidance available for researchers on how to do this better when running studies in secure settings. The CORAS study (COllaborative Risk ASsessment and management in secure services) is a research study in these settings that is exploring how to involve patients and carers in their risk assessments and risk management plans (or safety plans). We have developed detailed plans for how to make sure that patients and carers have a central role in all areas of this study, including designing parts of the study and how best to make sure that the results of the study reach patients and carers. This paper outlines how we are planning to do this, so that other researchers designing studies in these clinical settings can understand and build on some of the practical ways of involving people with lived experience. eng publication: N/A. Competing interests: The authors declare no competing interests.