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

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.

Defining the role of the public in Health Technology Assessment (HTA) and HTA-informed decision-making processes

“…There is some evidence that even where values are shared they may be differently weighted, for example, some studies suggest that patients have a higher tolerance of risk than the public (31). However, as the findings from this article and Boothe (6) suggest, the interests of patients, patient advocates, and patient members lie primarily in advocating for specific medicines or treatments which will benefit a particular patient group, whereas the interests of the public will always rest not only in ensuring equitable distribution of scarce resources amongst all patient groups but also in supporting a well-functioning society which sustains the wellbeing of all. Further, the goals of PPI described in this paper go well beyond the instrumental goals which might be met through observing changed recommendations from an advisory committee or an altered final funding decision as a result of PPI (6).…”

“…Further, the goals of PPI described in this paper go well beyond the instrumental goals which might be met through observing changed recommendations from an advisory committee or an altered final funding decision as a result of PPI (6). This narrow understanding of the potential impact of PPI neglects the benefits of a more transparent and inclusive process particularly in democratic accountability and in maintaining and rebuilding public trust in government decision making (6). More empirical research is needed to explore whether increased public and patient involvement increases public trust in the HTA process.…”

“…The Pharmaceutical Benefits Advisory Committee (PBAC) and Medical Services Advisory Committee (MSAC) processes allow and invite public input but the process primarily attracts submissions from patients, carers, and patient advocacy groups (16). In 2006, the Canadian Drug Expert Committee added two public members and the Ontario Committee to Evaluate Drugs added two patient representatives but the role of both is to collect, interpret, and present information from patient groups (6).…”

“…Public and patient involvement in Health Technology Assessment (HTA) and HTA-informed decision making, at least initially, appears to have been undertaken with relatively little attention to the roles these groups might play. Boothe suggests that, without any clear goals, the inclusion of public members in the Canadian Drug Expert Committee was a response to demands by patients’ groups “and a reluctance on the part of experts in agencies responsible to involve patients directly on the committee” (6, p.639). She also documents how our iterative engagement (7), described in this paper, sparked intense reflection and debate amongst researchers, agencies, and patient communities (6) with one ministry official commenting, “they're working on trying to make a conceptual distinction between patient and public…I find that really hard to draw, except at the extreme case” (6, p.640).…”

“…Boothe suggests that, without any clear goals, the inclusion of public members in the Canadian Drug Expert Committee was a response to demands by patients’ groups “and a reluctance on the part of experts in agencies responsible to involve patients directly on the committee” (6, p.639). She also documents how our iterative engagement (7), described in this paper, sparked intense reflection and debate amongst researchers, agencies, and patient communities (6) with one ministry official commenting, “they're working on trying to make a conceptual distinction between patient and public…I find that really hard to draw, except at the extreme case” (6, p.640). As of November 2019, there is no definition of “public” provided in the glossary of Health Technology Assessment international (HTAi) (8) or HTAGlossary.net although there are definitions of patient, consumer, user, advocate, and patient representative (see Table 1).…”