Abstract

BackgroundThere have been recent important advances in conceptualizing and operationalizing involvement in health research and health‐care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization – definition, enrolment, enactment and appraisal.MethodOurs was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory.FindingsTwenty‐six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co‐governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals.ConclusionTo improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co‐governance and dissemination of research processes and findings.

Highlights

  • There have been recent important advances in conceptualizing and operationalizing involvement in health research and health-care service development

  • Problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care

  • Twenty-six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field

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Summary

Introduction

There have been recent important advances in conceptualizing and operationalizing involvement in health research and health-care service development. Problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care. Patient and public involvement (PPI) has increasingly become the focus of attention in health services research and health services development. There are a number of models or frameworks that aim to conceptualize public and patient involvement (PPI). Gibson et al.’s7 recent work on conceptualization of PPI provides a valuable overview of models and frameworks in the field, and provides new theoretical directions (that were previously absent) for an emancipatory concept of patient and public involvement in health services development. A systematic review by Brett et al.[9] focused on the conceptualization, measurement and impact of outcomes of PPI in health and social care research

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