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Table 1 Primary themes, gaps and recommendations

From: Applicability of a national strategy for patient-oriented research to people who use(d) substances: a Canadian experience

SPOR framework dimension Theme Issues/Gaps Recommendations
Roles: patient as an inclusive term Shifting roles: from patient to community researcher Use of term patient implies passivity and lack of power
Sets up an ‘us’ and ‘them’ dynamic
Family as co-researchers lost in the framework
Shift away from use of term patient partner or researcher
Use of the term community researcher
Thread through families
Benefits for individual in terms of skills and knowledge From individual to community benefits Lack of recognition of community benefits Use of CBPR
Feeling like part of a Community (countering isolation)
Feeling heard and benefits of research for a better future
SPOR principles: inclusiveness, support, mutual respect, and co-building solutions Trust and equitable relationships as key principles Lack of recognition of trust as key principle
Lack of recognition of power inequities
Recognition of substance use related stigma and trust building
Recognition of power inequities by all team members
Ensure equitable pay
Creation of a core research team with people with lived/living expertise
Engagement in governance and decision making, capacity building for patient engagement, and tools and resources From patients to drivers and co-learning Patients as ‘other’ rather than driving research
Lack of recognition that researchers not just patients need capacity building
Use of CBPR
Core Research Team
Two way and co-learning
Missing SPOR component From safety to action in POR Missing emphasis on actioning the findings Use of CBPR
Accountability for action
Catalytic validity