Wong-Rieger Durhane, Tsai I-Ching, Tan Jin Yu, Wu David Bin-Chia, Yu DaeYoung, Keetley Alison, Best Alex, Jain Ritu
Canadian Organization for Rare Disorders, Toronto, ON, Canada.
Asia Pacific Alliance of Rare Disease Organizations, Singapore, Singapore.
Int J Technol Assess Health Care. 2025 May 14;41(1):e28. doi: 10.1017/S0266462325000224.
This study explored patient involvement in healthcare decision-making in the Asia Pacific region (APAC) by identifying roles and factors influencing differences between healthcare systems. Proposed recommendations to enhance patient engagement were made.
This systematic literature review was conducted using studies from Australia, China, Japan, Malaysia, New Zealand, the Philippines, South Korea, Singapore, Taiwan, and Thailand. Studies were included if they provided data on patient involvement in health technology assessment (HTA) and/or funding decisions for medicines. Extracted data were scored according to eleven parameters adapted from the National Health Council (NHC) rubric, which assessed the level of patient involvement in healthcare system decision-making.
We identified 159 records between 2018 and 2022, including methodology guidelines from Government websites. Most mentioned parameters were patient partnership, patient-reported outcome, and mechanism to incorporate patient input. Limited information was available on diversity and patient-centered data sources. Tools for collecting patient experience included quality-of-life questionnaires, focus groups, interviews, and surveys, with feedback options like structured templates, videos, and public sessions.Beyond input in assessment process, involvement of patients in decision-making phase has evolved within HTA bodies over time with considerable variation. Few APAC healthcare systems involve patients in the appraisal process as members of the recommendation or decision-making committee.
The findings indicate that while patient involvement in pharmaceutical reimbursement decisions exists, improvements are needed. Effective integration of patient input requires transparency, education, and resource planning. This study establishes a baseline to track progress and assess the long-term impact of patient involvement.
本研究通过确定影响医疗保健系统差异的角色和因素，探讨亚太地区患者在医疗保健决策中的参与情况。并提出了增强患者参与度的建议。
本系统文献综述使用了来自澳大利亚、中国、日本、马来西亚、新西兰、菲律宾、韩国、新加坡、台湾和泰国的研究。如果研究提供了患者参与卫生技术评估（HTA）和/或药品资金决策的数据，则纳入研究。根据从国家卫生委员会（NHC）评分标准改编的11个参数对提取的数据进行评分，该标准评估了患者在医疗保健系统决策中的参与程度。
我们在2018年至2022年期间确定了159条记录，包括政府网站的方法指南。最常提及的参数是患者伙伴关系、患者报告结果以及纳入患者意见的机制。关于多样性和以患者为中心的数据源的信息有限。收集患者体验的工具包括生活质量问卷、焦点小组、访谈和调查，以及结构化模板、视频和公开会议等反馈选项。除了在评估过程中的参与，随着时间的推移，患者在决策阶段在HTA机构中的参与情况有所发展，差异很大。亚太地区很少有医疗保健系统让患者作为推荐或决策委员会的成员参与评估过程。
研究结果表明，虽然患者参与了药品报销决策，但仍需改进。有效整合患者意见需要透明度、教育和资源规划。本研究建立了一个基线来跟踪进展情况并评估患者参与的长期影响。
