Participatory Design is an approach that brings together patient/public partners, community organizations, health researchers, clinicians, decision-makers and policy makers to collaboratively explore research design decisions such as: important research priorities; how the research question is defined; how to make sure that data collection methods are sensitive to the real-world context of people living with the health issue; outcome measures that matter most to patients; how data is interpreted; and best ways to share research findings. Research partners are brought together several times throughout the research project, starting from the initial exploration and defining of the research problem to the development of the research design. This method is best if health researchers can support and facilitate the meaningful engagement of patient/public partners throughout the duration of the project and at the depth of participation required for their involvement in participatory design decision-making.
Participatory Design can be useful for:
- Gaining insight from patient/public partners around the research design such as: outcomes that matter most to people with lived experience of the health issue; data collection approaches that are appropriate and sensitive to the realities of potential research participants in the project; and research participant recruitment materials that are written in accessible language and address potential concerns of research participants.
- Creating opportunities for patient/public partners' to build capacity, skills and strengths in research; as well as researchers' to build capacity to engage patient/public partners in the collaborative development of research design.
- Working together as a team towards a common goal.
Note: This type of engagement requires a large time commitment by patient/public partners. It also may require increased knowledge and skills in order to participate, amplifying the differences in patient/public partners' abilities. Make sure to provide accessible supporting materials to help patient/public partners in participatory design decision-making.