Table 4 Takeaway messages from synthesized findings

ᅟ• Even if ECRs are awardees and are part of an established POR network, a majority self-reported having minimal or basic knowledge of POR. There is therefore a clear need for a coherent and concerted strategy for POR capacity development, in which the perspectives and specific needs of ECRs are taken into account.

ᅟ• ECRs had a slightly different understanding of patient engagement than those found in the literature. To make sure that we all have a common understanding of POR, ECRs expressed the need for a definitional framework of POR that would set out patients’ degree of engagement, their roles, and how they should be involved.

ᅟ• ECRs assigned different roles to PPRs in various phases of a research project. ECRs envisioned PPRs’ desirable characteristics as genuine engagement, interpersonal skills, and experience with the health condition. Professionalization (i.e., having a professional background) was not seen as desirable.

ᅟ• ECRs anticipate POR to become mainstream around 2023.

ᅟ• ECRs are at the forefront of this paradigm shift in research and are willing to play many roles (up to ten) in POR deployment: knower, awareness-raising vector, ethically sensitive thinker, disseminator/ broker, motivator, builder/creator, teacher, doer, delegate/representative and activist.