What should engagement in health research look like? Perspectives from people with lived experience, members of the public, and engagement managers

Journal article

Pratt, Bridget. (2022). What should engagement in health research look like? Perspectives from people with lived experience, members of the public, and engagement managers. Cambridge Quarterly of Healthcare Ethics. 31(2), pp. 263-274. https://doi.org/10.1017/S0963180121000657
AuthorsPratt, Bridget
Abstract

Engagement in health research is increasingly practised worldwide. Yet many questions remain under debate in the ethics field about its contribution to health research and these debates have largely not been informed by those who have been engaged in health research. This paper addresses the following key questions: what should the ethical goals of engagement in health research be and how should it be performed? Qualitative data were generated by interviewing 22 people with lived experience, members of the public, and engagement managers about power sharing in health research. Thematic analysis of study data identified the following five themes: the value of engagement in research, ideal engagement, tokenistic engagement, terms to describe those engaged, and engagement roles in research. The paper presents that data and then considers what insights it offers for what engagement should look like—its ethical goals and approach—according to those being engaged.

Keywordsethics; engagement; involvement; health research; participation; power
Year2022
JournalCambridge Quarterly of Healthcare Ethics
Journal citation31 (2), pp. 263-274
PublisherCambridge University Press
ISSN1469-2147
Digital Object Identifier (DOI)https://doi.org/10.1017/S0963180121000657
PubMed ID35243981
Scopus EID2-s2.0-85125688791
Page range263-274
FunderAustralian Research Council (ARC)
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online04 Mar 2022
Publication process dates
Deposited02 Jun 2023
ARC Funded ResearchThis output has been funded, wholly or partially, under the Australian Research Council Act 2001
Grant IDDE170100414
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