In this topic page, both patients and researchers describe having to find a balance between the time needed for partnership commitments and that for other work and personal commitments. While some of the patients described having sufficient time, others felt challenged to manage their various commitments as a research partner, their own work, studies and/or family obligations.
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The need for flexibility
Patients appreciated when there was flexibility in the timing of meetings, for example scheduling evening meetings or being able to indicate preferred times through an online poll. It was also appreciated when facilitators respected the timelines for the meetings, and when there was an ability to meet online or ensuring that meetings were not too long. These kind of strategies helped patients to balance their participation with their personal obligations.
At times the workload for the patient engagement activities could also become overwhelming.