SCIE Research resource 02: Collection of examples of service user and carer participation in systematic reviews

By Sarah Carr and Esther Coren.

Published: February 2007

This collection of case studies of user involvement in systematic reviews has been produced to complement SCIE's Research Resource 1: Systematic review guidelines. The intention is that this document will be updated as new reports of user involvement in reviews become available. The three examples included here provide an overview of user and carer participation in different aspects of the systematic review process.

Summary of examples

Example 1

This example of a systematic review looks at consumers’ perspectives on electro-convulsive therapy (ECT). It is a unique example in social care research of a service user-led systematic synthesis of research. The review included user perspectives on ECT compared with clinically rated outcomes. In this review the lead researchers were service users with experience of ECT. There was also a project advisory group that included service user members.

Example 2

This systematic review was funded by the Department of Health and conducted at the Evidence for Policy and Practice Information and Coordinating (EPPI) Centre. It concerned HIV prevention in men who have sex with men. This review involved service user organisations participating in the review on its advisory group.

Example 3

This systematic review was part of a series of projects to develop evidence-based policy for the National Newborn Screening Programme. In this review, the user involvement was mostly concerned with the interpretation and implementation of the findings so that useful guidance could be developed.


A SCIE knowledge review comprises several elements: a systematic review of the knowledge available in research, a survey of practice which explores knowledge not reported in the literature and generates examples of good practice, and the contextual knowledge provided by policy, organisational change processes and legislation. As part of its commitment to transparency and rigour, SCIE is developing a comprehensive description of all these processes.

This resource complements SCIE’s Research resource 1: The conduct of systematic research reviews for SCIE knowledge reviews.

The resource will be updated as new reports of user involvement in reviews become available.


The aim of this resource is that it will encourage systematic reviewers to involve service users in conducting systematic reviews and to make them aware of the sorts of things they will need to consider when involving service users.


This guidance is for use by SCIE employees in commissioning work and for use by all researchers who undertake SCIE research commissions. It will also be useful for everyone who undertakes systematic reviews both in social care and health.

To find out more