2019
DOI: 10.1111/hex.12873
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Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

Abstract: Background Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. Objective The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and… Show more

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Cited by 150 publications
(231 citation statements)
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References 71 publications
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“…As concluded by the 2014 Institute of Medicine: ‘Prepared, engaged patients are a fundamental precursor to high‐quality care, lower costs and better health’ . In this study, we provide an example of how to actively engage patients and other stakeholders using established best practices, along with a novel storytelling approach . The engagement approaches including storytelling contribute to the literature on using innovative methods to address the knowledge‐to‐action gap between the ‘what’ and ‘how’ of patient engagement .…”
Section: Discussionmentioning
confidence: 99%
See 3 more Smart Citations
“…As concluded by the 2014 Institute of Medicine: ‘Prepared, engaged patients are a fundamental precursor to high‐quality care, lower costs and better health’ . In this study, we provide an example of how to actively engage patients and other stakeholders using established best practices, along with a novel storytelling approach . The engagement approaches including storytelling contribute to the literature on using innovative methods to address the knowledge‐to‐action gap between the ‘what’ and ‘how’ of patient engagement .…”
Section: Discussionmentioning
confidence: 99%
“…Second, patient stakeholders had the decision‐making power. A shared and collaborative decision‐making process was used throughout the entire project period to identify research priorities . We applied a multiple iteration approach that involved face‐to‐face meetings, workshops and a conference round table to prioritize the research topics.…”
Section: Discussionmentioning
confidence: 99%
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“… Other stakeholder engagement efforts are illustrative of the benefits of improving vocabulary around this topic. These include the following: stakeholder engagement frameworks and guidance not focused on community stakeholders specifically, a scaleable approach to patient engagement for patient‐centred outcomes research (PCOR), successful patient engagement for health‐care experiences and outcomes, and community engagement measures focused on partnership strength . Specifically evaluating community stakeholders' contributions to research, however, needs a framework specifically focused on characterizing and measuring community representative activities through the process of conceiving, conducing, analysing and reporting clinical and translational research.…”
Section: Introductionmentioning
confidence: 99%