Participatory Health Research

International Observatory on Health Research Systems

by Sharif Ismail

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This document is a thematic report that provides an overview of public participation in health research. The report is part of a series available from RAND Europe's Observatory on Health Research Systems. The purpose of the document is to provide non-specialists with an overview of the evolution and development of participatory health research across a range of economically developed countries. The report is divided broadly into two parts. The first part addresses the rationale for involving lay participants in health research in the first place, and explores some of the drivers underpinning recent moves to bolster participatory research methods. It also highlights some of the advantages and disadvantages of participatory approaches. The second part includes a series of country case studies, covering current patient and service-user involvement practices in Australia, Canada, the Netherlands, the United Kingdom, and the United States. The report concludes with a review of some options available to policymakers looking to boost or improve current practices, and an outline of further research needs. The report will be of interest to government officials dealing with health research policy, medical research councils, health research charities, institutions hosting health research projects, researchers, and patients and service users themselves.

Table of Contents

  • Chapter One

    Introduction

  • Chapter Two

    What is participatory health research?

  • Chapter Three

    What are the drivers for the spread of participatory health research?

  • Chapter Four

    Does participatory health research work?

  • Chapter Five

    Lessons from international experiences

  • Chapter Six

    What's next? Improving participatory health research methods

Research conducted by

The research described in this report was prepared for the UK Department of Health and conducted by RAND Europe.

This report is part of the RAND Corporation technical report series. RAND technical reports may include research findings on a specific topic that is limited in scope or intended for a narrow audience; present discussions of the methodology employed in research; provide literature reviews, survey instruments, modeling exercises, guidelines for practitioners and research professionals, and supporting documentation; or deliver preliminary findings. All RAND reports undergo rigorous peer review to ensure that they meet high standards for research quality and objectivity.

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