Determining the level at which public and patient partners will be engaged in research is primarily a question of who will hold decision-making power in the research study.
The level of engagement may change depending on the stage or phase of research – that is, public and patient partners may be engaged at a higher level of decision-making during one phase than another (for example, partners having more control over research design than data collection in a study).
Primary Goal: Obtain feedback or input
Stage of Research: Can occur at any stage of the research process
Decision-Making Power: Lies with researchers
- Clearly communicate to public and patient partners which research decisions they will be informing (e.g. research priorities, question, design, data collection approaches, interpretation of findings, dissemination); and
- Continually inform public and patient partners on how their input is being used (feedback loop of accountability).
Primary Goal: Actively partner with patients and/or members of the public
Stage of Research: Every aspect of the research process, and ongoing partnership beyond the research study or project
Decision-Making Power: Shared between researchers and public and patient partners
- Requires commitment, trust, openness, flexibility, time, resources, adequate planning and preparation, and critical reflexive practice;
- Consider anti-oppressive and trauma-informed approaches to ensure meaningful and authentic involvement; and
- Acknowledge and address power imbalances between researchers, healthcare practitioners, public and patient partners, and other research team members.
- All decisions about the research process are controlled and made by public and patient partners; and
- The role of researchers is to support public and patient partners in the process.