Broadening public participation in systematic reviews: a case example involving young people in two configurative reviews

Abstract

BackgroundArguments supporting the involvement of users in research have even more weight when involving the public in systematic reviews of research. We aimed to explore the potential for public involvement in systematic reviews of observational and qualitative studies.MethodsTwo consultative workshops were carried out with a group of young people (YP) aged 12–17 years to examine two ongoing reviews about obesity: one about children's views and one on the link between obesity and educational attainment. YP were invited to comment on the credibility of themes, to propose elements of interventions, to suggest links between educational attainment and obesity and to comment on their plausibility.ResultsResearchers had more confidence in review findings, after checking that themes identified as important by YP were emphasised appropriately. Researchers were able to use factors linking obesity and attainment identified as important by YP to identify limitations in the scope of extant research.ConclusionConsultative workshops helped researchers draw on the perspectives of YP when interpreting and reflecting upon two systematic reviews. Involving users in judging synthesis credibility and identifying concepts was easier than involving them in interpreting findings. Involvement activities for reviews should be designed with review stage, purpose and group in mind. © 2015 The Authors. Research Synthesis Methods published by John Wiley & Sons, Ltd.

Patient and public involvement in a study of multimedia clinical trial information for children, young people and families

“…Consistent with previous work (Oliver et al, 2015;Alderson et al, 2019), further strengths identiied included timely and open communication with members, especially when providing them with feedback on their contributions; poor or non-existent feedback has been criticized by public involvement contributors in other studies (Ashcroft et al, 2016;Brett et al, 2014a). Members also noted the beneit of having clearly deined roles, which are important in ensuring members are not disappointed or confused by the nature of their involvement (Brett et al, 2014a).…”

“…The current body of knowledge in this area is concentrated on the involvement of adults, although there is a growing literature on the experiences of involving children and young people (Bate et al, 2016;Parsons et al, 2018;Alderson et al, 2019;Dovey-Pearce et al, 2019;Brady and Preston, 2017;Bird et al, 2013;Nufield Council on Bioethics, 2015;Kellett, 2005;Forsyth et al, 2019). For example, children and young people have been involved in the design of interventions for clinical trials (Boote et al, 2016) and in synthesizing evidence from systematic reviews (Oliver et al, 2015). The demand is that such research is carried out in such a way that people are listened to and heard (Roberts, 2000), with involvement leading to research, and ultimately treatments and services, that better relect children and young people's priorities and concerns Fleming and Boeck, 2012).…”

An integrated model for increasing the use of evidence by decision-makers for improved development

“…What is more though, and extends beyond the mere acknowledgment that context matters greatly as in our model, is that increasingly this research and capacitybuilding provide active advice and guidance on how to move from an analysis of contextual factors into an active integration and embedment of these factors into evidence use interventions. Lastly, we also point to the body of scholarship on co-production and user-engagement in research (Stewart & Liabo, 2012, Oliver et al, 2015Sharples, 2015). While we have not explored this in detail in our own research and capacity-building, we would be curious to see the analytical and conceptual relevance of our model for evidence-informed decision-making interventions that foster a co-production and engagement between evidence producers and users.…”

Cochrane Qualitative and Implementation Methods Group guidance series—paper 2: methods for question formulation, searching, and protocol development for qualitative evidence synthesis

“…Approaches to involving stakeholders in the review process may be broadly characterised as before-after involvement, iterative involvement and synchronous involvement [21][22][23] as described in Box 2.…”