In this topic page, we describe how patient roles have been determined in patient-researcher partnerships. Researchers and patients told us that it is important to have open discussions about expectations of the partnership and that determining a role for patient partners should be a joint decision between all involved.
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Deciding on patient partner roles in projects
Types of patient partner roles and managing expectations
Both the patients and researchers we interviewed agreed in general that patient partners should be part of the conversation when deciding what their role would be on research project(s). They emphasized that these conversations ideally should take place in early project planning.
For most, having clearly defined expectations about what researchers and patient partners wanted out of the partnership was helpful in determining patient partner roles on the project(s). A common suggestion was to develop a formal agreement for the partnership.
For some patient partners, when their roles were not clearly defined and researcher expectations were not clear, they felt that this took away from them having a positive experience working on the project(s).
Taking time to reflect on their role and expectations of patient partners was important for some researchers. For junior researchers, learning from other researchers who have experience with patient-researcher partnerships was helpful to navigate this process.
The term ‘professional patient partner’ was identified as something to be avoided. It created inappropriate expectations for patients and researchers in the creation of partnerships and was problematic for those who mentioned this. Researchers and patients alike discussed that patients should not feel that they have to commit to being a patient partner for the full length of the project timeline. As well, patient partners should not be expected to have a professional clinical or research degree to be able to participate as a patient partner in any role.
There was general agreement that patients should be able to be involved as patient partners in both short- or long-term commitments and the type of role can vary depending on specific project opportunities and patient interests. Researchers and patients acknowledged that researchers need to be flexible about where they involve patient partners and expectations around time commitment.
As well, as the project evolves there may be other opportunities that arise for patient partners to get involved in other roles.
Patients suggested that patient partners need to be their own advocate when having conversations with researchers about what their role will be in the partnership, as well as when they feel that the role is no longer working for them. As well, patients should feel that they can say no to any role that does not interest them and/or fit with their availability.
With more experience working with researchers, patients may find it more comfortable to speak about how they want to be involved in the partnership.