(Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time.

Katherine Boothe

doi:10.1017/s1744133121000013

Abstract

How do experts judge the legitimacy of technical policy processes, and do their ideas change as these processes are opened to other stakeholders and the public? This research examines the adoption of public and patient involvement in pharmaceutical assessment in Canada. It finds tensions between scientific legitimacy that prioritizes rigor and objectivity, and democratic legitimacy that values inclusion and a broader range of evidence. In response to policy change, experts incorporate new ideas about democratic inputs and processes, while maintaining scientific policy goals. The research responds to calls for more precise measurement of ideas and ideational change and more evaluation of public and patient involvement in health policy. It helps us understand the significance of, and limits to, ideational change among experts in health policy domains that are highly technical and publicly salient. Understanding the way democratic and scientific legitimacy are negotiated in policy decisions has a wide applicability in health, but is particularly relevant during a global pandemic when evidence is being generated rapidly, decisions must be made quickly, and these decisions have a significant, immediate effect on the lives of all citizens.

Highlights

In Canada, pharmaceuticals are an anomaly in the public health system
This paper focuses on legitimacy in the eyes of drug advisory committee members, and asks whether committee members focus exclusively on scientific legitimacy, or whether they acknowledge a role for democratic legitimacy in health technology assessment (HTA)
The paper first analyzes evidence of technical members’ ideas about HTA and public and patient involvement available in studies conducted soon after the adoption of public and patient involvement. It finds that at this time, technical members acknowledged a need for more public involvement and greater transparency, but expressed serious concerns about the ways public and patient involvement might detract from the scientific legitimacy of the process

Summary

Introduction

In Canada, pharmaceuticals are an anomaly in the public health system. Governments provide universal, comprehensive public hospital and medical insurance on a relatively uniform basis nation-wide, but unlike all other countries with a broad public health system, outpatient pharmaceuticals are not included. This paper takes the adoption of public and patient involvement in some Canadian drug advisory committees starting in 2006 as an opportunity to study changing ideas about legitimacy. It asks how policy actors respond when faced with an institutional change that challenges their ideas about their work and professional identity. It asks whether and how committee members’ understandings of legitimacy have changed since the introduction of public and patient involvement by considering the potentially conflicting paradigms of scientific and democratic legitimacy. A key finding of this research is that gradual, non-radical change can occur in the absence of wholesale paradigm change, and that it has a meaningful impact on how actors relate to a policy process

Data and methods

Conceptualizing legitimacy and measuring change

Discussion and conclusions