Content |
Quantity: the amount of information contained in the module or repetition of information | “It was very well-organized and logically sequenced. I liked that the different methods of engagement were linked to the spectrum of engagement, which helped deepen my understanding of it.” (P5, C1) | – |
Relevance: the relevance of the module to its intended users | “As a patient, I feel very well represented in this module and I feel like my mom can empathize with a lot of what [one of the caregivers] was saying [about barriers to] getting involved in research studies. It’s literally, do you have the time to have a full-time job, be a caregiver, and do something extra on top of it.” (P14, C1) “I do think that unless you’re already doing co-design, and maybe if you are doing co-design, I still think it’s a good refresher or there are things that you can learn.” (P11, C1) | – |
Understandability: readability, use of plain language, explanation of important terminology, etc. | “You guys outlined CIHR and PCORI earlier, but I am not familiar with them, so I’d have to look them up, do you have a link on them?” (P13, C1) “I’m glad you had that pop-up [definition] for lived experience — to define that was really good.” (P22, C2) | Added a new tool box with descriptions and links for more information on each national initiative to promote patient and public involvement in research. |
Usefulness: how useful the information is or who the information would be useful for | “[Partners] need to get compensated in a way that’s meaningful to them. Everybody likes money, but sometimes for youth volunteer hours are more valuable. Co-authorship has value for some, no value whatsoever for others.” (P10, C1) “I think the examples given around compensation are more reimbursements, but the definition of compensation says it is not to be confused with covering expenses.” (P6, C1) “A question I see coming up is the difference between doing a focus group where it is a qualitative study and people are participants versus partners. I think that focus groups, described that way, blurs that line a little bit.” (P6, C1) | Updated the glossary definition for compensation to clarify the distinction between covering expenses and compensation for engagement, and also added additional resources on patient partner remuneration. Modified the definition for focus groups to exclusively describe it as a method for capturing partner insights to inform the conduct or design of a research project, compared with a form of qualitative data collection. |
Learner experience |
Preference for information access: users’ preferences regarding information access | “Where is Research 101? Does it tell you why you got [the knowledge check question] wrong?” (P13, C1) | Changed the method of feedback for the “select all that apply” knowledge check questions, from a reference to another module to an explicit explanation of the correct and incorrect responses. |
Satisfaction: user satisfaction with the module | “I think you get a lot out of it for the relatively small [time] investment that you’re making to go through it, especially with the tool box takeaways as well.” (P9, C2) | – |
Module length: time required to complete the module | “Something like this is a lot more palatable for somebody who feels that maybe they want to learn a little bit more, but they’re not going to commit multiple days or even half a day on something.” (P20, C2) | – |
Engagement: how engaged users are as they proceed through the module | “I think it’s good to have [users click to advance the module] because it’s like little bite-sized pieces and then you have to actively move it forward. It’s like protection against inattention.” (P3, C1) | – |
Attributes of learner-centred design |
Ease of use: how users perceive the ease of use and functionality of the module | “Some people get a bit anxious about how much time it’s going to take [...] just reassure people that it’s short and won’t take them that long.” (P27, C2) | Clearly posted the estimated time required to complete both parts of Patient Engagement 101 on the PORCCH website. |
Intuitive design: the ease at which users know what to do next | “I guess I kind of forgot about the tool boxes, or maybe didn’t pay close enough attention to that navigation slide, so I thought, ‘oh what’s this here for’.” (P1, C1) | Added additional audiovisual prompts to provide navigational support and remind users about the interactive features. |
Design aesthetic |
Navigation: the ability of the user to easily move around the module | “I wasn’t sure how to get out of that section. I noticed there was a Previous Slide button, but I thought to myself ‘Do I have to click it 4 times to get back?’” (P11, C1) | Added audiovisual navigational prompts to places in the module that participants found confusing or difficult to navigate. |
Visual assets: videos, graphics and animations in the module | “I found that video really illuminating, as there were a lot of elements that the [parent partner] talked about that I see are lacking in our study, but which might influence changes to protocol or engagement practices for future studies.” (P18, C2) | – |