Information for Patients & Communities

What is the role of the patient on a research team?

Patients and family members can serve a variety of roles on the research team, based on their abilities and interests and the research team needs. Some examples include choosing research priorities, advising on different research approaches, and helping with data interpretation and analysis. Patients can help researchers write surveys that are more understandable or relevant for the research participants or help with focus groups and interviews; their input is often invaluable in interpreting data. In addition, SCPOR has a number of advisory committees which include patient and family advisors. See this diagram for some of the many ways patients and family members can get involved.

What is the time commitment?

Patients may be involved in a research study from start to finish, or may choose to participate at particular times and for particular activities. As well, the time commitment is unique to each project. How the patient participates, and how long their commitment will be, is negotiated with the research team and is dependent on the patient’s abilities and interests. Rural and remote patient and family advisors may prefer to participate largely by teleconference or video conference; flexible and creative solutions to travel and time issues may be necessary.