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.

ABSTRACT:

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

SUBMITTER: Jewell A 

PROVIDER: S-EPMC6558776 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature