Usher Institute of Population Health Sciences and Informatics, No 9 Edinburgh Bioquarter, 9 Little France Road, Edinburgh, EH 16 4UX, UK.
European Patients' Forum, 180 Chaussée d'Etterbeek, Brussels, Belgium.
Patient. 2018 Dec;11(6):581-589. doi: 10.1007/s40271-018-0325-5.
Health technology assessments (HTAs) are meant to inform health policy by taking account of all the potential impacts of using a health technology. In the 1990s, HTAs included rigorous research to produce patient-based evidence, and some supported participation of patient representatives to help focus HTA research and determine value. In the 2000s, HTAs became more closely linked to reimbursement decisions, focusing on clinical and cost effectiveness. Patient involvement should be tailored to the specific needs of each HTA. As the timeframe for HTAs has reduced, research to produce patient-based evidence has been replaced by input from patient groups. This places a burden on individuals and organizations that needs to be critically reviewed. Therefore, it is imperative that we clarify when patient involvement is likely to add value and support patients to provide their unique knowledge in the most optimal way to influence HTA decision making. To reduce the burden on patient groups, more must be done to encourage research to produce patient-based evidence early in technology development. Like clinical research, a programme of research should be carefully planned, with appropriate methodological rigor for each study, and all research should be published. For this, the development of quality standards for research to produce patient-based evidence may be needed. Patient involvement has inherent value. It should be focused, systematic and transparent, and evolve according to the experiences of all stakeholders. All countries or collaboratives that undertake HTA should consider how they can elicit the needs, preferences and experiences of patients to support creation of patient-centered healthcare policy.
健康技术评估（HTA）旨在通过考虑使用卫生技术的所有潜在影响来为卫生政策提供信息。20 世纪 90 年代，HTA 纳入了基于患者的严格研究，并且有一些支持患者代表参与，以帮助关注 HTA 研究和确定价值。21 世纪 00 年代，HTA 与报销决策更加紧密地联系在一起，侧重于临床和成本效益。患者参与应根据每个 HTA 的具体需求进行调整。随着 HTA 的时间框架缩短，用于生成基于患者的证据的研究已被患者群体的投入所取代。这给个人和组织带来了负担，需要进行严格审查。因此，当患者参与有可能增加价值并支持患者以最佳方式提供其独特知识来影响 HTA 决策时，我们必须明确这一点。为了减轻患者群体的负担，需要做更多的工作来鼓励在技术开发早期进行基于患者的证据研究。与临床研究一样，应该精心规划研究计划，为每项研究提供适当的方法严谨性，并且所有研究都应发表。为此，可能需要制定用于生成基于患者的证据的研究质量标准。患者参与具有内在价值。它应该集中、系统和透明，并根据所有利益相关者的经验不断发展。所有进行 HTA 的国家或合作机构都应考虑如何了解患者的需求、偏好和经验，以支持创建以患者为中心的医疗保健政策。
