This project aimed to understand what was going on in public involvement in health research based on an investigation of the relationship between the practice of involvement and conceptualisations of involvement in the literature. A qualitative exploration was conducted of two case studies where researchers involved members of the public in the design, planning and conduct of health research. The methodological approach drew on realism, reflexivity and abduction. Data were gathered by observation, interview and collection of documents.
The literature review identified that key critiques of involvement practice were based on different understandings of the purpose of involvement, and that normative and substantive rationales valued different kinds of outcomes with significant implications for both the conceptualisation and evaluation of involvement. Key components of involvement were distilled from the literature and not all were addressed by current conceptualisations of involvement in research. Findings suggest that the evaluation of involvement practice based on rationale and key components has potential to improve understanding because the criteria for judging practice are closely related to desired outcomes and address all aspects of involvement agreed as important.
The case studies provide a rich picture of involvement in context and additional insights into processes, mechanisms, and impacts of involvement. Consideration of the range of impacts identified, and their connection to the rationale for involvement identified a range of conceptual issues related to the outcomes of involvement.
The project’s findings have been used to develop new theory-based tools to support the planning, practice and evaluation of involvement. These include a framework for the evaluation of involvement, identification of potential involvement tasks and roles for involvement in health services research, ideas to support thinking about the context of involvement in research, and ways to improve thinking about the range of experiential expertise needed when recruiting research partners.