The Maudsley Biomedical Research Centre (BRC) data linkage service user and carer advisory group: creating and sustaining a successful patient and public involvement group to guide research in a complex area

BACKGROUND: Patient and Public Involvement (PPI) in health and social care research has been shown to improve the quality and relevance of research. PPI in data linkage research is important in ensuring the legitimacy of future health informatics initiatives, but remains sparse and under-developed. This article describes the setting up and evaluation of a service user and carer advisory group with the aim of providing feedback and advice to researchers developing or making use of database linkages in the field of mental health. AIM: The aim of this study is to describe the creation and formative evaluation of the service user and carer advisory group after a trial period of 12 months. METHOD: Six individuals were recruited to the group all of whom had personal experience of mental illness. A formative evaluation was conducted after a trial period of 12 months. RESULTS: Evaluation revealed that the group succeeded in promoting dialogue between service users/carers and researchers. Factors that contributed to the success of the group’s first year included the opportunity it provided for researchers to involve service users and carers in their projects, the training provided to group members, and the openness of researchers to receiving feedback from the group. CONCLUSION: The group encourages the incorporation of PPI in data linkage research which helps to ensure the legitimacy of data linkage practices and governance systems whilst also improving the quality and relevance of the research being conducted using linked data. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s40900-019-0152-4) contains supplementary material, which is available to authorized users.