PRO adoption in clinical cancer care is increasing nationwide, but to date the focus has been on those “able and willing” to engage in their completion. Engaging in PRO completion during cancer care requires personal agency: responsibility for what you experience, and the sense of being able to influence that experience, your actions and outcomes in life. Personal agency is particularly challenging in the clinical cancer context – where concepts such as patient-centred, values-based, and shared decision-making and are relatively new constructs in a domain traditionally ruled by clinical hierarchy void of meaningful partnerships with patients and their families.
This presentation will discuss those populations who may experience limited personal agency, and therefore be less “able and willing” to use PROs to guide their cancer care. Populations such as those with significant medical morbidities, cognition changes, where treatment impacts patient voice, carers, and those receiving treatment while incarcerated will be considered. Solutions to optimize personal agency equitably will be discussed.