Question 1 (Simon R. & Elisa L.)

The paper outlined 3 research phases in which patient engagement can occur:
i. Preparatory phase – agenda setting, prioritization of research topics and funding
ii. Execution phase – study design & procedures, study recruitment, data collection, and
data analysis
iii. Translation Phase – dissemination, implementation, and evaluation

Of the 142 citations included in this review, patient engagement occurred most frequently in the Execution phase (90), followed by the Translation phase (52), and least frequently in the Preparatory phase (35). Is this surprising? Why or why not?

These finding by Dominic et al. were not surprising to me. One reason why the preparatory phase has the lowest occurrence of patient engagement may be because researchers at this early stage may still be deciding how exactly to incorporate patient engagement into their projects.

The execution phase may have the highest frequency of patient engagement simply because it occurs before the translation phase (and after the preparatory phase, when researchers may not have implemented it, as explained above). Drawing from the article from the last webinar session, this may be because public participation in research is undervalued and consequently, only tokenistically integrated. Once the requirement of patient engagement is ‘’checked off’’ in the early stages of the project, some researchers may feel that there is no further need to involve the public.

I agree, these findings are not surprising. As Elisa puts it, the researchers are probably still deciding on the logistics and scope of the study and it may not make sense to researchers to include patients at this point. That being said, it seems like it would be beneficial to involve patients at this stage, but I can see why they would not be in most studies.

Considering that study recruitment and data collection are in the execution phase, it makes sense that there would be the highest engagement at this time. As the authors mention, focus
groups, interviews, and surveys were the most common tools for patient engagement, and they all fit nicely in this second stage. For the third stage, it makes sense that implementation would involve some patient engagement, while dissemination and evaluation seem less likely to have as much.

I also agree with Elisa's suspicion that "tokenism" plays a role in the low engagement. The authors of this week's article even make the same conclusion: "this engagement comes
at a cost and can become tokenistic" (p. 7)