Abstract

ObjectivesTo explore how embedded patient and public involvement is within mainstream health research following two decades of policy-driven work to underpin health research with patient and public involvement in England.MethodsRealist evaluation using Normalization Process Theory as a programme theory to understand what enabled patient and public involvement to be embedded as normal practice. Data were collected through a national scoping and survey, and qualitative methods to track patient and public involvement processes and impact over time within 22 nationally funded research projects.ResultsIn research studies that were able to create reciprocal working relationships and to embed patient and public involvement this was contingent on: the purpose of patient and public involvement being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of patient and public involvement; patient and public involvement opportunities being provided throughout the research and ongoing evaluation of patient and public involvement. Key contested areas included: whether to measure patient and public involvement impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as ‘authentically’ lay; scaling-up patient and public involvement embedded within a research infrastructure rather than risk token presence and whether patient and public involvement can have a place within basic science.ConclusionsWhile patient and public involvement can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing moral and methodological imperatives.

Highlights

  • While patient and public involvement (PPI) in research is increasing in many parts of the world,[1] the United Kingdom (UK) health research arena is recognised as having led the way through its significant policy drive to embed PPI within the national health research infrastructure.[2]

  • PPI became a statutory part of the national research governance framework in 2005 and is integral to the main UK health research funding streams

  • Alongside a growing body of evidence is 20 years’ experience of attempts to embed PPI in UK health research, which in the past decade has been underpinned by a well-resourced infrastructure and dedicated organization (INVOLVE) to support PPI within the National Institute of Health Research (NIHR)

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Summary

Introduction

While patient and public involvement (PPI) in research is increasing in many parts of the world,[1] the United Kingdom (UK) health research arena is recognised as having led the way through its significant policy drive to embed PPI within the national health research infrastructure.[2] PPI became a statutory part of the national research governance framework in 2005 and is integral to the main UK health research funding streams. To establish PPI within a national research infrastructure requires significant investment. Such resources are commonly justified by two main arguments. Alongside the democratic imperative, the moral argument asserts that research conducted on people without their input is unethical. The second argument for PPI is methodological, that having PPI within a research study will improve recruitment, impact and outcomes

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