Searching for the impact of participation in health and health research: challenges and methods

Internationally, the interest in involving patients and the public in designing and delivering health interventions and researching their effectiveness is increasing. Several systematic reviews of participation in health research have recently been completed, which note a number of challenges in documenting the impact of participation. Challenges include working across stakeholders with different understandings of participation and levels of experience in reviewing; comparing heterogeneous populations and contexts; configuring findings from often thin descriptions of participation in academic papers; and dealing with different definitions of impact. This paper aims to advance methods for systematically reviewing the impact of participation in health research, drawing on recent systematic review guidance. Practical examples for dealing with issues at each stage of a review are provided based on recent experience. Recommendations for improving primary research on participation in health are offered and key points to consider during the review are summarised.