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加强 PCORnet 推进以患者为中心的医疗成果研究(PCOR)中以患者为中心的经济结果能力的途径。

Avenues for Strengthening PCORnet's Capacity to Advance Patient-Centered Economic Outcomes in Patient-Centered Outcomes Research (PCOR).

机构信息

Department of Biomedical Informatics, Biostatistics, and Medical Epidemiology, University of Missouri School of Medicine, Greater Plains Collaborative, PCORnet Clinical Research Network, Columbia, MO.

Children's Hospital of Philadelphia, Philadelphia.

出版信息

Med Care. 2023 Dec 1;61(12 Suppl 2):S153-S160. doi: 10.1097/MLR.0000000000001929. Epub 2023 Nov 9.

Abstract

PCORnet, the National Patient-Centered Clinical Research Network, provides the ability to conduct prospective and observational pragmatic research by leveraging standardized, curated electronic health records data together with patient and stakeholder engagement. PCORnet is funded by the Patient-Centered Outcomes Research Institute (PCORI) and is composed of 8 Clinical Research Networks that incorporate at total of 79 health system "sites." As the network developed, linkage to commercial health plans, federal insurance claims, disease registries, and other data resources demonstrated the value in extending the networks infrastructure to provide a more complete representation of patient's health and lived experiences. Initially, PCORnet studies avoided direct economic comparative effectiveness as a topic. However, PCORI's authorizing law was amended in 2019 to allow studies to incorporate patient-centered economic outcomes in primary research aims. With PCORI's expanded scope and PCORnet's phase 3 beginning in January 2022, there are opportunities to strengthen the network's ability to support economic patient-centered outcomes research. This commentary will discuss approaches that have been incorporated to date by the network and point to opportunities for the network to incorporate economic variables for analysis, informed by patient and stakeholder perspectives. Topics addressed include: (1) data linkage infrastructure; (2) commercial health plan partnerships; (3) Medicare and Medicaid linkage; (4) health system billing-based benchmarking; (5) area-level measures; (6) individual-level measures; (7) pharmacy benefits and retail pharmacy data; and (8) the importance of transparency and engagement while addressing the biases inherent in linking real-world data sources.

摘要

PCORnet(国家以患者为中心的临床研究网络)通过利用标准化、经过策展的电子健康记录数据以及患者和利益相关者的参与,提供了进行前瞻性和观察性实用研究的能力。PCORnet 由患者为中心的结果研究所(PCORI)资助,由 8 个临床研究网络组成,总共包含 79 个医疗系统“站点”。随着网络的发展,与商业健康计划、联邦保险索赔、疾病登记和其他数据资源的链接证明了扩展网络基础设施的价值,以更全面地体现患者的健康和生活体验。最初,PCORnet 研究避免将直接经济比较有效性作为研究主题。然而,PCORI 的授权法案于 2019 年修订,允许研究将以患者为中心的经济结果纳入主要研究目标。随着 PCORI 扩大范围以及 PCORnet 于 2022 年 1 月开始第三阶段,有机会加强网络支持经济以患者为中心的结果研究的能力。本评论将讨论迄今为止网络采用的方法,并指出网络有机会将经济变量纳入分析,同时考虑患者和利益相关者的观点。讨论的主题包括:(1)数据链接基础设施;(2)商业健康计划伙伴关系;(3)医疗保险和医疗补助链接;(4)基于医疗系统计费的基准测试;(5)区域水平指标;(6)个人水平指标;(7)药房福利和零售药房数据;以及(8)在解决将真实世界数据源链接固有的偏见时透明度和参与的重要性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/68f6/10635342/6beb72006186/mlr-61-s153-g001.jpg

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