The Research Family Advisory Committee: the patient and family view of implementing a research-focused patient engagement strategy

Abstract

Plain English summary Patient engagement in research is a way of working in partnership with patients and members of the public to plan, manage, design and carry out health research, leading to improved patient care. Extensive research has been published on the practices individual research teams can use to positively engage patients and families in research. A current gap in existing research is the methods health care organization can use to achieve authentic patient engagement. In this report, we describe the implementation of a research-focused patient engagement strategy and the lessons learned from the patients and families involved in developing the strategy.

Keywords

• Patient engagement
• Patient perspective
• Patienta: Patient engagement in research
• Paediatrics