Table 1 PCOR Engagement Principles and Examples

Trust

Worked with patient and family Co-Investigators over a long period of time, allowing everyone to get to know each other.

Frequent communication and involvement in every aspect of our grant application.

Honesty

Approached our work with integrity.

We were realistic about our capacity to accomplish study aims and possibility of grant rejection.

Co-learning

Learned from patient, family member suggestions for application details and incorporated these suggestions in final application.

Transparency

Shared every step of the application process and all materials.

Reciprocal relationships, Partnership

Fully depend on the patients and family members for the study idea, research aims, design and outcomes.

PI personally asked each patient and family member to be a full Co-Investigator (Co-I) on our grant application.

Respect

We used terminology for the family members involved in our research team. We had a long conversation with this group about how to refer to the family members on our research team i.e. did they prefer to be called care partners, caregivers, or something else. Ultimately, they decided they wanted to be referred to as family members.