Glossary and terminology – Patient Engagement Platform

The following are terms and phrases used within the Patient Engagement Platform:

Strategy for Patient-Oriented Research (SPOR)

  • An initiative to make health research more relevant to patients, to ensure patients are engaged in research as partners, and to help research findings become quickly adopted into direct patient care.

Patient

  • An overarching term inclusive of individuals with personal experience of a health issue and/or, informal caregivers, including family and friends.

Patient-Oriented Research (POR)

  • A continuum of research that engages patients, focusses on patient-identified topics, and/or improves patient outcomes.

Patient engagement in research

  • Meaningful and active collaboration of patients in governance, (including ethical and funding review, and as members on a research advisory committee); and across the research process (Figure 1) in any or all phases (for example, idea generation, preparation/planning, design/execution, translation/dissemination (can include priority setting), and evaluation).

Alberta SPOR SUPPORT Unit (AbSPORU)

  • The Alberta SPOR Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit comprises seven “platforms” or departments that offer services to patients and researchers to support patient-oriented research in Alberta.

Note: This glossary and terminology is informed by the Canadian Institutes for Health Research SPOR guiding principles of inclusiveness, support, mutual respect, and collaborative building.