Association Française contre les Myopathies - Téléthon, Evry, France.
Institut national d'excellence en santé et en services sociaux (INESSS), Montreal, QC, Canada.
Int J Technol Assess Health Care. 2023 Aug 8;39(1):e51. doi: 10.1017/S0266462323000417.
While patient participation in individual health technology assessments (HTAs) has been frequently described in the literature, patient and citizen participation at the organizational level is less described and may be less understood and practiced in HTA bodies. We aimed to better understand its use by describing current practice.
To elicit descriptive case studies and insights we conducted semi-structured interviews and open-ended questionnaires with HTA body staff and patients and citizens participating at the organizational level in Belgium, France, Quebec, Scotland, and Wales.
We identified examples of organizational participation in managerial aspects: governance, defining patient involvement processes, evaluation processes and methods, and capacity building. Mechanisms included consultation, collaboration, and membership of standing (permanent) groups. These were sometimes combined. Participants were usually from umbrella patient organizations and patient associations, as well as individual patients and citizens.
Although the concept, participation at the organizational level, is not well-established, we observed a trend toward growth in each jurisdiction. Some goals were shared for this participation, but HTA bodies focused more on instrumental goals, especially improving participation in HTAs, while patients and citizens were more likely to offer democratic and developmental goals beyond improving participation processes.
Our findings provide rationales for organizational-level participation from the perspectives of HTA bodies and patients. The case studies provide insights into how to involve participants and who may be seen as legitimate participants. These findings may be useful to HTA bodies, the patient sector, and communities when devising an organizational-level participation framework.
尽管患者参与个人卫生技术评估（HTA）在文献中经常被描述，但患者和公民在组织层面的参与较少被描述，在 HTA 机构中可能理解和实践得更少。我们旨在通过描述当前实践来更好地了解其使用情况。
为了引出描述性案例研究和见解，我们对 HTA 机构的工作人员和在比利时、法国、魁北克、苏格兰和威尔士以组织形式参与的患者和公民进行了半结构化访谈和开放式问卷调查。
我们确定了组织参与管理方面的例子：治理、定义患者参与流程、评估流程和方法以及能力建设。机制包括咨询、协作和常设（永久）小组的成员资格。这些有时是结合在一起的。参与者通常来自伞式患者组织和患者协会，以及个别患者和公民。
尽管参与组织层面的概念，即参与组织层面，尚未得到很好的建立，但我们观察到每个司法管辖区都有增长的趋势。对于这种参与，有一些共同的目标，但 HTA 机构更关注工具性目标，特别是改善对 HTA 的参与，而患者和公民更有可能提供民主和发展目标，而不仅仅是改善参与过程。
我们的研究结果从 HTA 机构和患者的角度为组织层面的参与提供了理由。这些案例研究为如何让参与者参与以及谁可能被视为合法参与者提供了见解。这些发现对于 HTA 机构、患者部门和社区制定组织层面的参与框架可能是有用的。
