Levels of Engagement

Levels of Patient & Public Engagement in Health Research

Determining at which level of involvement patients and members of the public will be engaged is primarily a question around the decision-making process for the research study (i.e. Who holds the decision-making power?).

It is important to note that throughout the research process patients and members of the public can be engaged at different levels at different phases of the study.



  • The primary goal is to obtain feedback or input
  • Can occur at any stage of the research process
  • Decision-making power lies with the researchers


Important to remember:

  1. Make sure you have a clear idea of what research decision (e.g. research priorities, question, design, data collection approaches, interpretation of findings, dissemination of findings) patient/public partners will be able to inform — and clearly communicate this to them.
  2. Continually inform patient/public partners on how their feedback is informing the research process (i.e. feedback loop of accountability).




  • The primary goal is to actively partner with patients and/or members of the public in every aspect of the research process.
  • There is an ongoing partnership between researchers and patient/public partners.
  • Decision-making power is shared between researchers and patient/public partners.


Important to remember:

  1. This level requires commitment, trust-building, openness, flexibility, time, resources, adequate planning/preparation and critical reflexive practice.
  2. Think about trauma-informed, anti-oppressive, anti-racist, and anti-colonial approaches in order to ensure meaningful and authentic involvement. Additionally, recognize and respond to power imbalances between researchers and patient/public partners on the study team.


  • The primary goal is for patients and/or members of the public to actively control, direct and manage the research process.
  • The role of researchers may be to train and support patient/public partners in the research process and in some instances, to help carry out the research process under the direction of the patient/public partners.
  • Decision-making power lies with patient/public partners.


Important to remember:

  1. All decision-making with regard to the research process is made by patient/public partners, and the role of the researcher is to support them in the research process.



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