Table 2 Reflection and action

1. How did the research team ensure involvement of the right people in the three projects?

Principle 1: Involve the right people

Involved patient and family partners with relevant and direct experience of dementia and LTC

2. Did the team involve enough patient and family partners in the three projects?

Principle 2: Involve enough people

Involved people with diverse backgrounds and experiences (3 patient partners, 3 family partners) to provide a reasonable breadth and depth of views on the LTC issues

3. Did the team involve patient and family partners enough in all three projects?

Principle 3: Involve those people enough

Involved early, e.g., JM served as the co-lead, MG, LJ, LW, AB, SD were involved in research grant preparation, study planning, shared decision-making on roles and responsibilities, data collection and analysis, co-authorship in reporting research in conferences, publication, as well as served as spokespersons in media communications

4. How did patient and family partners help/contribute to all three research projects?

Principle 4: Describe how it helps

All patient and family partners helped identify research questions and outcome priorities in preparing the proposal to ensure relevance and acceptance

Contributed to problem solving in weekly research meetings

Contributed to data collection by conducting interviews and team analysis

Contributed to a rewarding intergenerational learning experience for trainees (university students)

Contributed to knowledge translation activities, e.g., speaking to the TV news, public videos