Table 1 A note on terminology

The term “patient” is used in different ways in the literature, which seems to depend on region. In the North American context, it is often used in an inclusive sense, comprising patients and family members/caregivers (e.g., Canadian Institutes of Health Research (CIHR) [57]), and sometimes patient advocacy organizations (e.g., Patient-Centered Outcomes Research Institute (PCORI) [58]). In this paper, however, we use “patient” in the exclusive sense, as the survey instrument we used identifies patients, family members/caregivers and patient advocacy organizations separately. Throughout, we use “stakeholder” in CIHR’s sense (“An individual, group or organization having a “stake” in an issue and its outcome.” [59]) We use the phrase “patients and other stakeholders” to reflect these distinctions.