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Public involvement has been advocated as a means to enhance the responsiveness of healthcare systems. Yet despite its obvious appeal, the concept has remained poorly defined and its rationale and objectives are rarely specified when applied to the healthcare sector. This report aims to update existing work on both the conceptual and the empirical evidence for public involvement in healthcare policy. We draw on a comprehensive review of the published literature, supplemented by exploratory observations from selected public involvement initiatives in different health system contexts.

Despite a growing literature base, the concept of "public involvement" remains poorly defined although as a complex and multidimensional phenomenon a call for simple clarification of the concept may not be desirable. Public involvement practice varies by underlying rationale, public motivation to become involved, and specific mechanisms and their relationship to wider social processes. We propose to interpret the term "involvement" as a descriptive umbrella term for the spectrum of processes and activities that bring the public into the decision-making process as it has the benefit of providing a fuller picture of potential involvement, which is independent of normative assumptions.

Sound empirical evidence of the outcomes of public involvement activities in healthcare remains underdeveloped. We find evidence for the developmental role of public involvement while the evidence for instrumental benefits of public involvement initiatives is less well documented. Yet overly focusing on outcomes of public involvement risks missing the normative argument that involving the public in the process may be seen to be of intrinsic value in itself.

Table of Contents

  • Chapter One

    Background

  • Chapter Two

    What is public involvement in healthcare policy?

  • Chapter Three

    Evidence for outcomes of public involvement

  • Chapter Four

    Evaluating public involvement

  • Chapter Five

    Discussion and conclusions

  • Appendix A

    Search terms for evidence of impact

  • Appendix B

    Overview of selected public involvement initiatives and interview protocol

  • Appendix C

    Interview protocol

  • Appendix D

    Empirical studies of outcomes of public involvement

  • Appendix E

    Evaluation assessment tools

Research conducted by

The research described in this report was sponsored by the Bertelsmann Foundation was conducted by RAND Europe.

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