Refers to “the active, meaningful, authentic and collaborative interaction between patients and other stakeholders across all aspects of the health ecosystem, where decision-making with regard to an activity or process is guided by patients’ contributions as partners, recognising their unique experiences, values and expertise.” This definition is also applicable across stakeholders and engagement activities (e.g., participation in an interview, focus group).
National Health Council Patient Engagement Glossary of Terms. Washington DC: National Health Council; 2019
https://nationalhealthcouncil.org/glossary-of-patient-engagement-terms/
To go in depth
Defining patient engagement
This document clarifies how patient engagement in research can be defined as: “the active, meaningful and collaborative interaction between patients and researchers across all stages of the research process, where research decision-making is guided by patients’ contributions as partners, recognizing their specific experiences and expertise.”
ISPOR. Defining Patient Centeredness and Engagement in HEOR: Proposed Definition and Stakeholder Response. Published May 21, 2018. Accessed October 2023
https://www.ispor.org/docs/default-source/presentations/1388.pdf?sfvrsn=ccb5658d_1
Patient Engagement Resource Centre
This is an easy to navigate platform with relevant public resources to understand the basics of patient engagement, and guide patients through the different phases of patient engagement, from planning to conducting and evaluating.
https://patient-engagement.eu
