Most researchers who partner with patients and families report that there is a need to plan for increased time in a project schedule, particularly in the beginning of a collaboration. Time is needed to build trust, establish relationships, and make sure that PFACs and PFAs sufficiently understand the research process and topic that is being studied so that they can actively participate. Researchers who are used to staying on a fast-paced and strict timeline, may find that when they involve PFACs and PFAs, discussions may take longer due to PFAs desire to understand an issue or process. Additionally, PFAs may make valuable suggestions that require changes in the study. These often affect timing but researchers who engage patients and families in their projects have found this to be a wise investment of their time. When planning a study, it is important to add in extra time in the project timeline.
“Remember, authentic engagement takes time. It may be several meetings before real conversation begins to happen.”— Researcher