“Getting to the Table”: Changing Ideas about Public and Patient Involvement in Canadian Drug Assessment

Abstract

Abstract Context: Involving patients and the public in health policy may contribute to legitimacy and accountability. However, tensions may arise between paradigms of scientific-evidence-based decision making and new ideas valuing inclusivity and patient experience when evaluating and allocating health resources. This article asks whether 10 years of experience with public and patient involvement in Canadian drug assessment has affected participants' ideas about how it works. Methods: The author surveyed the ideas of participants in the drug assessment process (members of expert committees, officials, and patient groups) as described in reports and hearings in 2005, 2007, and 2012 and conducted interviews in 2014 and 2016. Findings: The author found some consensus across groups of participants regarding the broad goals of health technology assessment (HTA) and the validity of some form of public and patient involvement. There were also important areas of disagreement and uncertainty about how public and patient involvement should be used in drug assessment and how much impact it has on deliberations and recommendations. Overall, uncertainly about the specific role for public and patient involvement in HTA limits the potential for ideational change among participants. Conclusions: These findings have implications for evaluation of public and patient involvement, the way we understand ideational change, and practical questions of communicating health resource decisions.