Patient engagement in preclinical laboratory research: A scoping review
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
Affiliations
Grace Fox
Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada
Dean A. Fergusson
Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada; School of Epidemiology and Public Health, University of Ottawa, Canada; Faculty of Medicine, University of Ottawa, Canada; Corresponding authors at: Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada.
Zeinab Daham
Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada; Ottawa Stroke Program, Ottawa Hospital Research Institute, Canada
Mark Youssef
Faculty of Medicine, University of Ottawa, Canada
Madison Foster
Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada
Evelyn Poole
Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada
Ayni Sharif
Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada
Dawn P. Richards
Patient Partner, Five02 Labs Incorporated, Canada
Kathryn Hendrick
Patient Partner, Toronto, Ontario, Canada
Asher A. Mendelson
Section of Critical Care Medicine, Department of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Canada
Kimberly F. Macala
Department of Critical Care Medicine, Royal Alexandra Hospital, University of Alberta, Canada; Department of Anaesthesiology and Pain Medicine, Royal Alexandra Hospital, University of Alberta, Canada
Zarah Monfaredi
Faculty of Health Sciences, Simon Fraser University, Canada
Joshua Montroy
Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada
Kirsten M. Fiest
Department of Critical Care Medicine, Cumming School of Medicine, University of Calgary & Alberta Health Services, Canada
Justin Presseau
Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada; School of Epidemiology and Public Health, University of Ottawa, Canada; School of Psychology, University of Ottawa, Canada
Manoj M. Lalu
Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada; Department of Anaesthesiology and Pain Medicine, The Ottawa Hospital, Canada; Corresponding authors at: Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, PO Box 201B, Ottawa, Ontario K1H 8L6, Canada.
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.
