Citation

Purtell RA, Wyatt KM. Int. J. Consum. Stud. 2011; 35(6): 605-608.

Copyright

(Copyright © 2011, John Wiley and Sons)

DOI

10.1111/j.1470-6431.2011.01016.x

PMID

unavailable

Abstract

Actively involving service users, patients and carers in the creation and development of health research in the UK has recently come under pressure to articulate why involvement is a good use of resources. This has led to a growing interest in creating ways to measure the impact of involving patients, service users and carers in research. However, there is a concern that fundamentally important issues about why we should meaningfully involve service users, patients and carers are missing from the current measurement discourses and activities undertaken in relation to measurement. This paper argues three distinct points, and is based on the experience of the authors working with Folk.us as well as other fields of involvement. Firstly, there should be an open and honest debate about what is meant by the need to measure and assess the effects of involving people in research, addressing issues such as who benefits from the measurement and assessment and why the involvement is being done. Secondly, if at the conclusion of the debate it is deemed necessary to measure and assess, there must be a full and frank discussion about what criteria are appropriate for the proper reporting of involvement activities. This discussion would need to include the less obvious activities that are crucial to active involvement, such as administrative tasks, and where such activities would sit within these criteria. Thirdly, we will consider when such criteria should be applied, at the beginning or end of projects and, indeed, whether one can categorize the 'beginning' or 'end' of involvement.