Table 1 Primary themes, gaps and 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