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, people 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 where in the research process patient partners may be able to inform — and clearly communicate this to patient and public research partners;
  2. Continually inform patients and/or the public on how their feedback is informing the research process (i.e. feedback loop of accountability).

 

Note: It is important to recognize that using surveys as a consultation tool is very different from having patients fill out a survey as part of your research and data collection.

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 patient/public partners.

 

Important to remember:

  1. This requires— commitment, trust-building, openness, flexibility, time, resources, adequate planning/preparation, and 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 members of the public on the study team.

3. PATIENT & PUBLIC-DIRECTED

  • The primary goal is for patients/members of the public 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, help patient/public partners in carrying out the research process under the direction of the community.
  • Decision-making power lies with patient/public partners.

 

Important to remember:

  1. All decision-making with regard to the research process is made by patients and/or members of the public, and the role of the researcher is to support communities in the research process.