From Patient Family Advisors to Patient Partners: SCPOR adopts the use of Patient Partner

-Contributed by Malori Keller, Patient Engagement & Empowerment Platform Lead, SCPOR

In June of 2019, SCPOR hosted patient and family advisors and key stakeholders to gather feedback and insight from their engagement with SCPOR.  During this discussion a patient and family advisor brought forward the proposal that our Centre move away from using the term “patient family advisor” and instead adopt the term “patient partner”. It was felt that patient partner was more inclusive language, and more accurately described the role patients play on research teams (as partners rather than as advisors).

SCPOR completed a national scan to determine what language other patient oriented-research organizations use and discovered the majority of support units and SPOR-funded entities actually use the term “patient partner” as opposed to “patient-family advisors”.  The scan revealed that seven of eleven other SPOR SUPPORT units and five of eight SPOR funded entities use the term patient partner.

The national scan findings were shared with the full SCPOR Patient & Family Advisory Council in October and a recommendation was agreed upon to change the language used by SCPOR to patient partner. Further the council recommended that no acronym be used and thus the term will be written in full as ‘patient partner.’

SCPOR has initiated this change in language in the materials it produces, its online branding and in its activities, and is encouraging our partners to do the same.

·        As a patient please feel free to use the term patient partner, advisor or whatever other term you feel most comfortable with.

·        Researchers and SCPOR partner organizations are encouraged to also use the language the patients they work with feel most comfortable.

We are truly a patient-oriented organization and therefore feel this change is one way we can demonstrate our commitment to following the direction of our patients. Thank you to our patient partners who brought forward this idea.

If you have any questions about this change please contact Malori Keller, Patient Engagement & Empowerment Lead at mkeller@hqc.sk.ca.