The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB)

Abstract

Abstract Objectives The value of patient and public involvement and engagement (PPIE) within the development and refinement of outcome measures is becoming increasingly recognized. The aim of this paper is to provide an overview of how PPIE was integrated within the development of a new measure designed for use in economic evaluations across health and social care, the EQ Health and Wellbeing (EQ-HWB™). Methods Four PPIE sessions were held at key stages. Discussions from each session and the outcome of any tasks were shared with the wider research team and used to help inform decision-making. Results and discussion PPIE covered several components of outcome measure development including; review of conceptual model; discussion on sub-domain inclusion; item refinement and reduction; pre-testing of items; selection of items for the measure; and design of the measure. Key learning points for future projects were highlighted including; consideration of practicalities, resources and logistics of PPIE activities; how sessions and activities are managed effectively; and how to managing expectations and communication from both researcher and PPIE perspectives. Conclusions The PPIE group provided invaluable insight into perspectives of future patients and carers. Their input was fed into a number of developmental stages. The formal involvement from the PPIE group meant that the voice of the general public was heard. This helped ensure the appropriateness of the design of the final measure.