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
Authors | Pratt, Bridget |
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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. |
Keywords | ethics; engagement; involvement; health research; participation; power |
Year | 2022 |
Journal | Cambridge Quarterly of Healthcare Ethics |
Journal citation | 31 (2), pp. 263-274 |
Publisher | Cambridge University Press |
ISSN | 1469-2147 |
Digital Object Identifier (DOI) | https://doi.org/10.1017/S0963180121000657 |
PubMed ID | 35243981 |
Scopus EID | 2-s2.0-85125688791 |
Page range | 263-274 |
Funder | Australian Research Council (ARC) |
Publisher's version | License All rights reserved File Access Level Controlled |
Output status | Published |
Publication dates | |
Online | 04 Mar 2022 |
Publication process dates | |
Deposited | 02 Jun 2023 |
ARC Funded Research | This output has been funded, wholly or partially, under the Australian Research Council Act 2001 |
Grant ID | DE170100414 |
https://acuresearchbank.acu.edu.au/item/8z198/what-should-engagement-in-health-research-look-like-perspectives-from-people-with-lived-experience-members-of-the-public-and-engagement-managers
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