Beyond direct health benefits there are other aspects with potential added value to cancer therapies. Molecular diagnostics supported by genomic profiling allow applied novel targeted therapies to effectively treat patients, tailoring the treatment to target their unique tumor characteristics (Al-Rohil et al., 2016). Several patient surveys, including Patient Reported Experience Measures (PREMs), have been developed to identify priorities of patient experiences and preferences (Weldring and Smith, 2013; Taylor et al., 2015; Tremblay et al., 2015; Windham et al., 2015; Burns et al., 2016; Halpern et al., 2016). Alongside this gradual shift toward personalized medicine, importance of patient engagement is also increasingly recognized (Tremblay et al., 2015; King et al., 2016; Schnipper et al., 2016). One driver behind their increased involvement is the recently initiated patient network for “big data” collection on individuals' genetic and therapeutic characteristics (CMBRP, 2016). However, patient representatives often argue that current value frameworks and guidelines have limitations in reflecting or even admitting the importance of patients' preferences (Pitts and Goldberg, 2015).