Table 2 Topics that require more training, tools and education to support effective patient engagement in research
Key topics presented in alphabetical order | |
|---|---|
Advocating for yourself (as a patient partner) and your voice in the room | Equity, diversity and inclusion considerations |
Authorship and intellectual property | Establishing and negotiating expectations among research partners |
Barriers to engagement experienced by patient partners | Ethics (e.g. when consent/assent is not needed from patient partners) |
Budgeting for engagement | Evaluation of engagement processes |
Communicating with patient partners and affirming the value they bring | Initiating and maintaining patient partnerships |
Compensation (of patient partners) | Patient engagement in the basic sciences |
Creating the space for patient partner input | Sharing lived experiences in the research and public setting |
Engaging patient partners with diverse backgrounds and viewpoints | The value of patient partners |