Participatory Decision-Making

Participatory Decision-Making

Participatory Decision-Making is a process that allows patient/public partners to collaboratively make research decisions (e.g. research priorities that need to be addressed in the project). It means finding a common ground and decisions that are acceptable to all patient/public partners. With Participatory Decision-Making, everyone in the group must agree with a decision. Patient/public partners are collaboratively involved in decision-making at various stages of the research process from the exploration and definition of the problem to developing solutions and/or interventions. Participation in decision-making is recurring.


Participatory Decision-Making has nine steps (note: we are using the research decision around research priorities to illustrate the steps):

1.  Define the research decision that needs to be made (e.g. “We need to decide on research priorities that mean the most to us.")
2.  Share experiential knowledge as a group
3.  Brainstorm potential research priorities
4.  Discuss all of the different suggested research priorities
5.  State the list of research priorities
6.  Debate and discuss
7.  Restate the final list of research priorities
8.  Test for consensus
9.  Consensus or major objections


Participatory Decision-Making can be useful for:

  • Deepening understanding of patient/public concerns around a research decision
  • Giving opportunities for patient/public partners to build skills
  • Developing a sense of community among patient/public partners and researchers
  • Patient/public partners feel an increased investment in the outcome of the research project


Note: Participatory Decision-Making requires a large time commitment for patient/public partners. It may require an increased knowledge and skills by patient/public partners and may amplify the differences in patient/public partners' abilities. Research teams should choose this method only if they have the appropriate supports and resources to help engage patient/public partners in decision-making at various stages of the research process.



Additional Resources:

1. Participatory Decision-Making: Introduction

2. Facilitator's guide to participatory decision-making

3. Patient Engagement: Heard and Valued Handbook

4. Patient Engagement: Heard and Valued Workbook