Patient engagement in preclinical laboratory research: A scoping review

Background: ‘Patient engagement’ involves meaningful collaboration between researchers and ‘patient partners’ to co-create research. It helps ensure that research being conducted is relevant to its ultimate end-users. Although patient engagement within clinical research has been well documented, the...

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Bibliographic Details
Main Authors: Grace Fox, Dean A. Fergusson, Zeinab Daham, Mark Youssef, Madison Foster, Evelyn Poole, Ayni Sharif, Dawn P. Richards, Kathryn Hendrick, Asher A. Mendelson, Kimberly F. Macala, Zarah Monfaredi, Joshua Montroy, Kirsten M. Fiest, Justin Presseau, Manoj M. Lalu
Format: Article
Language:English
Published: Elsevier 2021-08-01
Series:EBioMedicine
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Online Access:http://www.sciencedirect.com/science/article/pii/S2352396421002772
Description
Summary:Background: ‘Patient engagement’ involves meaningful collaboration between researchers and ‘patient partners’ to co-create research. It helps ensure that research being conducted is relevant to its ultimate end-users. Although patient engagement within clinical research has been well documented, the prevalence and effects of patient engagement in translational preclinical laboratory research remain unclear. The aim of this scoping review is to present current patient engagement activities reported in preclinical laboratory research. Methods: MEDLINE, Embase, and grey literature were systematically searched from inception to April 2021. Studies that described or investigated patient engagement in preclinical laboratory research were included. Patient engagement activities where patients (i.e. patients, family members, caregivers or community members) provided input, or consultation on at least one element of the research process were eligible for inclusion. Study characteristics and outcomes were extracted and organized thematically. Findings: 32 reports were included (30 primary studies, 1 narrative review, and 1 researcher guide). Most studies engaged patients at the education or priority setting stages (n=26). The most frequently reported benefit of patient engagement was ‘providing a mutual learning opportunity’. Reported barriers to patient engagement reflected concerns around ‘differences in knowledge and research experience’ and how this may challenge communication and limit meaningful collaboration. Interpretation: Patient engagement is feasible and beneficial for preclinical laboratory research. Future work should focus on assessing the impacts of patient engagement in this area of research.
ISSN:2352-3964