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Abstract
Background: The development of a policy for consumer participation in acute hospitals in Victoria, Australia, has led to growing interest in building a stronger evidence base for participation. The policy review identified a lack of rigorous studies. Health services have been encouraged to undertake research funded through competitive grants, but there was a lack of relevant knowledge, skills, tools, and support in the hospital domain. Objectives: To develop a program of educative materials for hospital-based teams evaluating consumer participation. Methods: The Cochrane Consumers and Communication Review Group established a program of research support, and commenced by developing the content for educative materials. Knowledge transfer processes of the Group’s Health Knowledge Network were involved, including dissemination and listening functions. A range of educational formats and methods for personalised support were employed. Results: Content for the educative materials derived from the Review Group’s scope included taxonomies of interventions and outcomes for communication with and participation by consumers. Regular electronic bulletins were disseminated to hospital-based research teams, with information on research design and summaries of relevant systematic reviews. Hospital teams identified questions which were investigated by the Review Group, and findings were disseminated to all teams and to the broader audience of the Health Knowledge Network. Questions concerned outcome measurement tools and study design issues. Group briefing sessions were provided. Personalised support was provided to teams at four hospitals (metropolitan and rural) with support requested at three stages: research project development, study conduct, and writing-up. Conclusions: Various epistemological standpoints and social and contextual factors have impeded the development of an evidence base for consumer participation. These include allegiance to different research traditions and the lack of a common or shared language to describe and categorise interventions and outcomes. The pressured context of busy acute hospitals placed a high burden on hospital research staff. Research support encompassed relatively straightforward issues but also complex statistical, measurement and study design issues. Reflections on the implications for building an evidence base, and for the development of health services research capacity to improve participation, will be made.