Table 2 Original and Revised Guiding Principles
From: Co-creation of a patient engagement strategy in cancer research funding
Principle | Original version | Revised version |
|---|---|---|
Safety | Principle not present in original version | We strive to create and support safe physical/virtual, emotional, and cultural spaces for respectful discussion and collaboration. This begins before the engagement occurs, during engagement, and continues even after engagement has ended |
Mutual respect | CCS staff, patient partners, researchers, and all stakeholders acknowledge and value each other's expertise and experiential knowledge | We acknowledge and value each other's expertise and experiential knowledge, recognizing equitable power among collaborators |
Co-build | CCS staff, patient partners, researchers, and all stakeholders work together from the beginning to identify problems and gaps, set priorities, co-create, evaluate, and implement solutions | We work together from the beginning to identify problems and gaps, set priorities, co-create, evaluate, and implement solutions |
Diversity of experiences | CCS encourages multiple patient perspectives, prioritizing inclusivity, equity, and accessibility | We require multiple patient perspectives, prioritizing inclusivity, equity, and accessibility |
Clear communication | Goals and expectations are outlined by project team members, touchpoints are set, and roles and responsibilities for all team members are defined | Goals and expectations are outlined by project team members, interpersonal boundaries and touchpoints are set, and roles and responsibilities for all team members are defined |
Knowledge exchange | Information is shared in a context of trust between all stakeholders for equitable power, mutual understanding, education, and support | We share information in a context of trust and for mutual understanding, education, and support, while respecting confidentiality. We strive to recognize different forms of knowledge, bias and power dynamics through critical reflexive thinking |
Personalized and progressive | Patient partner expertise is matched with projects, and both engagement and acknowledgment of engagement is tailored to the individual. Reflecting the nature of research, engagement will be meaningful and use a person-centered approach that evolves over time | Patient partner expertise is matched with projects, and patient partners are offered control and choice in engagement opportunities where possible. Both engagement and acknowledgment of engagement are tailored to the individual. Reflecting the nature of research, engagement will be meaningful and use a trauma-informed, person-centered approach that evolves over time, as needed |
Accountability | All stakeholders demonstrate social responsibility and take ownership of the projects and decisions they are involved in | We demonstrate social responsibility and take ownership of the projects and decisions we are involved in |