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. 2023 Nov 21;13(11):e073953. doi: 10.1136/bmjopen-2023-073953

Table 1.

Critical outcomes of research engagement and study measures*

Critical outcomes Measures
Patient centred How were PRPs engaged in, and influenced, each stage of research and critical research tasks?
Meaningful Are the research method and outcomes reflective of, and outcomes relevant to, the community and all group members?
Team collaboration What is the group members’ comfort level during discussions? Do all group members trust and respect each other? Are all group members clear about their roles on the project? Are PRPs and researchers given an opportunity to gain skills and knowledge in ways that work for them?
Understandable Are study materials patient-friendly, understandable and written in a common/plain language? Are all group members comfortable with the written materials? Evaluate the reading level of the research documents. Was the data presented in an accessible, understandable way to all members? Is the overarching goal, study purpose and research question understandable by everyone?
Rigorous Did the group appropriately integrate PRP suggestions without compromising rigour?
Integrity and adaptable Did PRPs propose any changes to the study design, methods, materials, etc., that were made/not made? If not made, explain why.
Legitimate To what degree was the sample or study population diverse and representative/unbiased?
Feasible Are research goals and methods realistic and feasible?
Ethical and transparent Are all methods ethical, culturally safe and patient-friendly? Is data/privacy protection more patient-centred and/or changed? Is honest transparent communication consistent throughout the project?
Timely Is conduct of research and sharing information with all group members timely?
Sustainable Is there a plan for sharing study findings? What role did PRPs play to disseminate study findings?

*Adapted from Dillon’s Critical Outcomes of Research Engagement (CORE) and measures.Dillon EC, Tuzzio L, Madrid S, et al. Measuring the impact of patient-engaged research: how a methods workshop identified critical outcomes of research engagement. J Patient Cent Res Rev 2017;4:237–46. 10.17294/2330-0698.1458

PRP, patient research partner.