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Health Research Policy and Systems
Published in: Health Research Policy and Systems 1/2018

Open Access 01-12-2018 | Review

Patient engagement in Canada: a scoping review of the ‘how’ and ‘what’ of patient engagement in health research

Authors: Elizabeth Manafo, Lisa Petermann, Ping Mason-Lai, Virginia Vandall-Walker

Published in: Health Research Policy and Systems | Issue 1/2018

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Abstract

Background

Over the last 10 years, patient engagement in health research has emerged as the next evolution in healthcare research. However, limited evidence about the clear role and scope of patient engagement in health research and a lack of evidence about its impact have influenced the uptake, implementation and ongoing evolution of patient engagement. The present study aims to conduct a scoping review to identify methods for and outcomes of patient engagement in health research.

Methods

An adaptation of the scoping review methodology originally described by Arksey and O’Malley and updated by Levac, Colquhoun and O’Brien was applied. Sources from a formal database search and relevant documents from a grey literature search were compiled into data extraction tables. Articles were synthesised into key themes according to the (1) methods and (2) outcomes of patient engagement in health research.

Results

The total yield for the scoping review was 55 records from across Canada, the United Kingdom and the United States. While evidence about the methods used to engage patients in health research is increasing, stronger evidence of specific patient and healthcare system outcomes is required. This necessitates further mobilisation of research that explores outcomes and that validates specific tools to evaluate engagement. Additionally, theoretical frameworks that can better inform and sustain patient engagement across the lifecycle of health research are lacking.

Conclusion

Further increasing the volume and reach of evidence about patient engagement in health research will support the paradigmatic shift needed to normalise the patient’s role in research beyond ‘subject’ or ‘participant’, so as to ultimately improve patient health outcomes and better address healthcare reform in Canada.
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Metadata
Title
Patient engagement in Canada: a scoping review of the ‘how’ and ‘what’ of patient engagement in health research
Authors
Elizabeth Manafo
Lisa Petermann
Ping Mason-Lai
Virginia Vandall-Walker
Publication date
01-12-2018
Publisher
BioMed Central
Published in
Health Research Policy and Systems / Issue 1/2018
Electronic ISSN: 1478-4505
DOI
https://doi.org/10.1186/s12961-018-0282-4

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