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Abstract
To review published examples of public involvement in research design, to synthesise
the contributions made by members of the public, as well as the identified barriers,
tensions and facilitating strategies.
Systematic literature search and narrative review.
Seven papers were identified covering the following topics: breast-feeding, antiretroviral
and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural
therapy; hormone replacement therapy and breast cancer; stroke; and parents' experiences
of having a pre-term baby. Six papers reported public involvement in the development
of a clinical trial, while one reported public involvement in the development of a
mixed methods study. Group meetings were the most common method of public involvement.
Contributions that members of the public made to research design were: review of consent
procedures and patient information sheets; outcome suggestions; review of acceptability
of data collection procedures; and recommendations on the timing of potential participants
into the study and the timing of follow-up. Numerous barriers, tensions and facilitating
strategies were identified.
The issues raised here should assist researchers in developing research proposals
with members of the public. Substantive and methodological directions for further
research on the impact of public involvement in research design are set out.
Copyright 2009 Elsevier Ireland Ltd. All rights reserved.