Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Canada.
Health Systems Impact Fellow, McMaster University, Hamilton, Canada.
Int J Technol Assess Health Care. 2021 Feb 9;37:e37. doi: 10.1017/S0266462321000088.
The practice of public and patient engagement (PPE) in health technology assessment (HTA) has spread worldwide, yet gaps in knowledge remain. We carried out an institutional ethnography of the Canadian Agency for Drugs and Technologies in Health (CADTH) public and patient involvement in HTA.
The research took place over 15 months and included observational work in the institutional settings, text review, and interviews with individuals working for or involved with the agency.
We found that despite demonstrated commitment to PPE, organizational history, governance structure, and practices were impediments to a unified approach to PPE. Unclear role descriptions for committee members and differences in philosophy and priority given to PPE across the organization presented challenges to effective participation. The high degree of value given to evidence-based principles at times conflicted with meaningful integration of patient input. A lack of clear goals and processes, roles, and differential treatment of evidence in PPE served to minimize the importance of patient experiences and to displace their validity. An acknowledgment of conflicts between multiple epistemic traditions at work within HTA activities may strengthen organizational approaches to PPE.
HTA organizations can learn from this study by reflecting on the challenges described and the recommendations offered to address them. We suggest solidifying CADTH's commitment to PPE with clear agency-wide roles and direction, values, and outcomes, a comprehensive framework, and policy and procedures. An acknowledgment of diverse epistemic traditions, as well as leadership and expertise in PPE, will strengthen CADTH's PPE activities and sustain its leadership position in the HTA field.
公众和患者参与（PPE）在卫生技术评估（HTA）中的实践已在全球范围内普及，但知识差距仍然存在。我们对加拿大药品和技术评估机构（CADTH）的公众和患者参与 HTA 进行了机构民族志研究。
研究历时 15 个月，包括在机构环境中的观察性工作、文本审查以及对为该机构工作或参与该机构的个人进行的访谈。
我们发现，尽管对 PPE 表现出了承诺，但组织历史、治理结构和实践是实施统一 PPE 方法的障碍。委员会成员的角色描述不明确，以及组织内部对 PPE 的哲学和优先事项存在差异，这些都对有效参与提出了挑战。高度重视基于证据的原则有时与患者投入的有意义整合相冲突。缺乏明确的目标和流程、角色以及 PPE 中证据的不同处理方式，使得患者体验的重要性降低，其有效性被取代。承认 HTA 活动中存在多种认识论传统之间的冲突，可能会加强组织对 PPE 的方法。
HTA 组织可以从这项研究中吸取教训，反思所描述的挑战和提出的建议，以应对这些挑战。我们建议通过明确机构范围内的角色和方向、价值观和结果、全面的框架以及政策和程序，来巩固 CADTH 对 PPE 的承诺。承认不同的认识论传统，以及在 PPE 方面的领导力和专业知识，将加强 CADTH 的 PPE 活动，并保持其在 HTA 领域的领导地位。
