In this topic page, we present the ideas that patients and researchers shared with us about how to define partnerships and what it means to have a true partnership. As well, we indicate participants’ preferences for the terms and language commonly used to describe patient or caregiver partners.
A true partnership was described as researchers and patients working together on a research project towards the same goal. A partnership should go beyond patients being involved as participants, and instead, involve patients in shared decision-making at points throughout the project. To read more about how patient partner roles were determined, you can visit Role Determination.
However, in some cases, such as rare diseases where the patient sample is small, there needs to be flexibility for patients to be able to participate both as partners and participants (not necessarily at the same time).
Some mentioned that there is a responsibility for researchers to ensure that a true partnership exists and that everyone remains on the same page throughout the partnership.
Researchers should also consider that patients can contribute meaningfully as partners based on their lived experiences regardless if they have the same illness or disease that is being focused on in the project. For example, one patient discussed how their experience and insights may be relevant for other patient groups.
Overall, what it means to have a true partnership can be different depending on the individual, and experiences will vary based on how each partnership is structured. However, there was complete agreement across participants that a true partnership does not involve using patients as tokens to meet any institutional or funding requirement that necessitates the inclusion of patient partners on a research project.
There are many different terms that have been used to describe partnerships and/or patient partners. Often the terms patient partnership and patient engagement are used interchangeably and may have different meanings depending on the individual or context. For some, differentiating between the two terms can be difficult because they feel that patients can be engaged in research across a spectrum (e.g., as a participant in a research study, as an advisor, or as a partner).
Furthermore, patients and researchers discussed terms they have used, or heard of, to describe patients who are involved in partnerships. Patients also shared their preferences and dislikes.
Examples of preferred terms:
- Patient partner
- Patient advisor
- Patient-caregiver dyad
- People with lived experience
- Community scholar (as per example from Indigenous project)
Examples of non-preferred terms:
- Patient engagement expert
- Patient representative
- Patient champions
For example, one patient liked the idea of a term that was more broad and encompassed people who come to the partnership with lived experience.
There were mixed opinions about whether or not it is important to have one common term. For some, they didn’t have a particular preference for a term, but mentioned that it may be less confusing if there were one, or a few, common terms used universally. For others, all terms essentially had the same meaning and what was more important was how the partnership was being managed.
However, when researchers are working within a community, any term that includes the word patient would not necessarily be appropriate.