Levels of Engagement


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).

 

 

To learn more, check out our blog post: The Levels of Public and Patient Involvement

1. CONSULTATION

Primary Goal: Obtain feedback or input

Stage of Research: Can occur at any stage of the research process

Decision-Making Power: Lies with researchers

Important Considerations:

  • 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).

 

 

2. COLLABORATION

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

Important Considerations:

  • 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.

3. PUBLIC- & PATIENT-DIRECTED

Primary Goal: Patients and members of the public actively control, direct, and manage the research process
 
Stage of Research: The entire process
 
Decision-Making Power: Lies with public and patient partners
 
Important Considerations:
  • 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.