1 Independent Qualitative Health Research Consultant, Canada.
2 Pan-Canadian Oncology Drug Review, 6319 Canadian Agency of Drugs and Technologies in Health , Canada.
J Health Serv Res Policy. 2018 Apr;23(2):72-79. doi: 10.1177/1355819617750686. Epub 2018 Apr 6.
Objectives While there is wide support for patient engagement in health technology assessment, determining what constitutes meaningful (as opposed to tokenistic) engagement is complex. This paper explores reviewer and payer perceptions of what constitutes meaningful patient engagement in the Pan-Canadian Oncology Drug Review process. Methods Qualitative interview study comprising 24 semi-structured telephone interviews. A qualitative descriptive approach, employing the technique of constant comparison, was used to produce a thematic analysis. Results Submissions from patient advocacy groups were seen as meaningful when they provided information unavailable from other sources. This included information not collected in clinical trials, information relevant to clinical trade-offs and information about aspects of lived experience such as geographic differences and patient and carer priorities. In contrast, patient submissions that relied on emotional appeals or lacked transparency about their own methods were seen as detracting from the meaningfulness of patient engagement by conflating health technology assessment with other functions of patient advocacy groups such as fundraising or public awareness campaigns, and by failing to provide credible information relevant to deliberations. Conclusions This study suggests that misalignment of stakeholder expectations remains an issue even for a well-regarded health technology assessment process that has promoted patient engagement since its inception. Support for the technical capacity of patient groups to participate in health technology assessment is necessary but not sufficient to address this issue fully. There is a fundamental tension between the evidence-based nature of health technology assessment and the experientially oriented culture of patient advocacy. Divergent notions of what constitutes evidence and how it should be used must also be addressed.
目的 虽然人们广泛支持患者参与卫生技术评估，但确定什么是有意义的（而不是象征性的）参与是复杂的。本文探讨了审查员和支付者对在加拿大泛癌症药物审查过程中患者参与有意义的含义的看法。
方法 定性访谈研究，包括 24 次半结构化电话访谈。采用恒定性比较技术的定性描述方法用于产生主题分析。
结果 当患者倡导团体的提交内容提供了其他来源无法获得的信息时，被认为是有意义的。这包括临床试验中未收集到的信息、与临床权衡相关的信息以及有关生活体验方面的信息，如地理差异和患者和照顾者的优先事项。相比之下，那些依赖情感诉求或缺乏自身方法透明度的患者提交内容被视为降低了患者参与的有意义性，因为它们将卫生技术评估与患者倡导团体的其他功能（如筹款或公众意识运动）混为一谈，并且未能提供与审议相关的可信信息。
结论 即使对于一个从一开始就促进患者参与的备受推崇的卫生技术评估过程，利益相关者期望的不一致仍然是一个问题。支持患者团体参与卫生技术评估的技术能力是必要的，但不足以完全解决这个问题。卫生技术评估的循证性质和患者倡导的体验导向文化之间存在根本的紧张关系。还必须解决什么是证据以及如何使用证据的不同概念。
