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What is Patient Engagement?

A group of five people in desks in a circle, talking.  Four women and one man, most wearing light blue shirts. The man has a laptop in front of him.

In traditional research activities including clinical trials, patients primarily contribute to the research as research participants, which are the subjects of the trial or research activity, by receiving the treatment or procedure being studied. This role is vital, as research would not be possible without their participation. However, our team believes that patient engagement can and should go beyond participation in the implementation of the research projects to include full collaboration of patients throughout the research process.

The Gardener’s Grove Team supports the Strategy for Patient-Oriented Research, which provides that “[p]atient-oriented research is about engaging patients, their caregivers, and families as partners in the research process. This engagement helps to ensure that studies focus on patient-identified priorities, which ultimately leads to better patient outcomes.”

Our team has conducted a number of trials that encourage patient engagement beyond the traditional patient participant role. In these trials, we invite patients to meaningful collaboration in the research process, requesting they participate in the initial research project concept build and design, development of research questions, through the implementation of interventions, and even participating in certain parts of the research projects and final analysis.

We agree with the Canadian Institutes of Health Research (CIHR) that “[t]his type of participation helps to ensure that the research being conducted is relevant and valuable to the patients that it affects.”

To learn more about patient engagement, the Strategy for Patient-Oriented Research (“SPOR”) and the SPOR Framework, please visit the CIHR Patient Engagement page.