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.

Patient & Researcher Connection Site now LIVE!

SCPOR is pleased to announce the launch of a new online tool that links patients, families, and communities with Patient-Oriented Research Projects.

Visit the site by clicking here!

SCPOR 2018-2019 Annual Report

Read about the ways SCPOR and our partners helped advance Patient-Oriented Research in Saskatchewan in the fiscal year 2018-2019! The annual report features a financial overview, a snapshot of the ways our services and supports were accessed, and profile stories of some of our top Patient-Oriented Research Leaders in the Province.

NEW: Data Availability Guide!

Download our new Data Availability Guide which provides useful information to researchers on what data-sets are available, details and descriptions about these data-sets, and how to access them. Click here to download the guide!

Shift Health's Midpoint Evaluation Completed

With a mandate from CIHR, SCPOR recently underwent a third-party evaluation to assess its performance and impact to date. To this end, SCPOR engaged Shift Health to lead this evaluation.  Over the course of six months, Shift Health developed a logic model and engaged a broad spectrum of stakeholders through interviews, working sessions and surveys to gather inputs on SCPOR's activities, performance and impact. The outputs of this process have not only provided the organization with an understanding of progress to date against its core values but will also guide future decision-making and position the unit for greater impact. View the midpoint evaluation report here.