Exploring the meaning and impact of public involvement in health research

There is growing acknowledgement of the value and utility of public involvement in health research in both the UK and internationally. Health policies have highlighted the potential benefits of public involvement to enhance the quality as well as the democratic accountability of publically funded research. Yet it is not always clear who to involve, when and how. There are uncertainties about the meaning of public involvement and there is much to learn about the impact. The six publications presented in this thesis are drawn from a programme of research that used both qualitative and quantitative methods to explore two questions: • What does it mean to involve the public in health research? • What is the impact of public involvement on research processes, outcomes and on key stakeholders? Consensus methods, employed in two studies, show agreement between researchers and the public on what it means to involve the public successfully in research, and that it is feasible to evaluate the impact of public involvement on five impact issues: identifying topics to research, prioritising topics, disseminating the findings, members of the public involved in the research, and researchers. A UK survey of researchers clarifies how researchers interpreted health policies and included the public in their research, while a qualitative prospective case study reveals the different ways in which public involvement had impact. Two critical reviews explore the meaning and impact of public involvement. The thesis discusses how my research has added to knowledge in this field and where ambiguities, challenges and questions continue. Public involvement is contested by some, and while my publications have contributed to deepening understanding about epistemological, conceptual and practical aspects, many uncertainties remain.