ESRC Research Methods Festival st July 2008 Exploring service user participation in the systematic review process Sarah Carr, Research Analyst, SCIE

The Social Care Institute for Excellence (SCIE)  The Social Care Institute for Excellence (SCIE) was established by the UK government in 2001 to develop the social care evidence base  As part of this work SCIE commissions systematic reviews in social care  SCIE is politically committed to service user and carer participation in all its work, including systematic review methodology  The result of service user and/or carer participation in the systematic review process is perhaps a more robust evidence base for decision making or at least one which is more accountable to consumers

SCIE’s systematic review resources  SCIE has produced 2 online resources to develop and promote participative social care systematic review methodology:  Coren E & Fisher M (2006) The conduct of systematic research reviews for SCIE knowledge reviews  Carr S & Coren E eds. (2007) Collection of examples of service user and carer participation in systematic reviews

Learning from SCIE examples  These SCIE resources include examples of participation by different service user and/or carer groups at various stages of the review process  ‘While there are fundamental principles for participation in general that must be adhered to, current knowledge suggests that there is no single, failsafe solution’ (Carr, 2006)  However, key learning points and principles are emerging from SCIE’s work in the field

Learning from SCIE examples  ‘Participation needs to be appropriate to its context and to take account of the issues involved, the objectives sought and the…[service users and/or carers] who make up the target group’ (Treseder, 1996).  This could include a complete range of options for participation, from a systematic review that is undertaken by user researchers in a user-led project team, to a research team peopled by non- user researchers who are advised by and accountable to a majority user and/or carer steering group.

Learning from SCIE examples There are potential opportunities for participation at each of the standard stages of a systematic review at which key decisions are made:  selection of topic (interventions, populations)  setting the research question and conceptual framework and developing the protocol (including outcome measures)  defining relevant studies (inclusion/exclusion criteria)  searching exhaustively (search strategy)  describing the key features of studies (data extraction form)  assessing their quality (quality appraisal criteria)  synthesising findings across studies (e.g. themes to dominate analysis)  drawing conclusions  dissemination of findings and recommendations

Key learning points for user participation  Informed choice  Collaboration  Influence  Perspectives  Power  Accountability  Resources

Conclusion ‘…the benefits far outweigh the limitations and meaningful involvement (of service users and carers) in research is something worth striving for…’ (Clark, Glasby & Lester, 2004)

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