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Part of deciding if you are ready to engage as a patient partner on a clinical research team depends on how you imagine seeing yourself contributing to a research project. The best way to do this is to think about the steps of the research process.
Potential roles for patient partners on clinical research teams were presented in the Introduction section What are Potential Roles for Patient Partners on a Clinical Research Team?. These were described using the steps of the research process and are outlined below. When you hover over the Research Process Steps below, a box will appear with a summary of each step. We want you to think about each of the Research Process Steps.
Please choose the top three steps of the research process where you imagine would be most interesting for you to be engaged with a clinical research team. Hold your cursor on each of your three priorities and drag each step into the first, second or third position. NOTE: You can drag each step by clicking and holding your cursor directly on the centre box or by clicking and holding your cursor on the three lines to the right of the centre box. If you wish, feel free to prioritize all the research process steps. However, it is only your top three that will be a focus in this decision aid.
The IAP2 Spectrum was described in the Introduction under What are the Levels of Public or Patient Participation and Engagement. The IAP2 levels of engagement have been described as inform, consult, involve, collaborate, and empower. Healthcare Excellence Canada defines a Patient Engagement Framework according to the following levels: inform, consult, involve, collaborate, and lead.
| Level | Description (Short & Friendly) | Example Activities |
|---|---|---|
| Informed |
"We’ll keep you in the loop!" You’re kept updated about the project. |
Receiving newsletters, email updates, or study results. |
| Consulted | "We’d love your thoughts!" You’re asked for feedback once or twice. The investigators may or may not use it. |
Reviewing a survey, commenting on a brochure. |
| Involved |
"Let’s work on this together!"
You help with specific tasks and are kept informed about how your feedback has been used. |
Joining a few meetings, helping shape materials such as survey questions. |
| Collaborating |
"You’re a core member of the team!" You’re involved throughout the project, with your advice being included into study decisions as much as possible. |
Attending regular Zoom calls, giving ongoing input. |
| Leading |
"You’re helping guide the project!" You co-lead or direct major parts of the work. This usually includes being involved in governance (e.g., advisory committees) and decision making (e.g., guiding recruitment strategies) |
Co-writing proposals, guiding decisions together with other team leaders. |
Identifying where you will be engaged in a study is only the first step in determining your priorities. It is also important to consider your level of engagement. Below are the top 3 research process steps that you prioritized in the list above. For each priority, select the Level of Engagement you’d like to have as a patient partner in the Research Process/Lifecycle. You can use the Level of Engagement more than once and if you are not sure about your level of engagement, select ‘Unsure’.
The top 3 research process steps that you prioritized above, are now listed below and we ask you to indicate a level of engagement for each.
For each of your top 3 priorities, select the Level of Engagement you’d like to have as a patient partner in the Research Process/Lifecycle.
These priorities reflect your current knowledge, but don’t worry, you can update your choices later in the My Readiness section. As you explore the Learn More section, your thoughts may change, and you’ll have the chance to adjust your responses as needed.
Note: You can use the Level of Engagement more than once.
| Priorities | Research Process Step | Level of Engagement |
|---|---|---|
| 1 | Identifying & Prioritizing | |
| 2 | Design | |
| 3 | Development of the Grant Proposal |
These priorities reflect your current knowledge, but don’t worry — you can update your choices later in the My Readiness section. As you explore the Learn More section, your thoughts may change, and you’ll have the chance to adjust your responses accordingly.
