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.

 

1. CONSULTATION

  • 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).

 

 

2. COLLABORATION

  • 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.

3. PATIENT & PUBLIC-DIRECTED

  • 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