Table 1 Four approaches to engaging patient partners in the research process
From: How to engage patient partners in health service research: a scoping review protocol
Organization | Term for patient | Approach | Definition of the approach |
|---|---|---|---|
NIHR, UK | Public | Public involvement | “(…) research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.” [7] |
CIHR, Canada | Patient | Patient-oriented research | “(…) a continuum of research that engages patients as partners, focusses on patient-identified priorities and improves patient outcomes.” [8] |
ICPHR, international | People | Participatory health research | “(…) the goal is to maximize the participation of those whose life or work is the subject of the research in all stages of the research process. (…) Research is not done ‘on’ people as passive subjects providing ‘data’, but ‘with’ them to provide relevant information for improving their lives.” [5] |
PCORI, USA | Patients, patient partners | Patient engagement | “The meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process – from planning the study to conducting the study, and disseminating study results.” [9] |