患者报告数据与有意义的数据工作的政治学。

Patient-reported data and the politics of meaningful data work.

机构信息

University of Copenhagen, Denmark.

出版信息

Health Informatics J. 2019 Sep;25(3):567-576. doi: 10.1177/1460458218820188. Epub 2018 Dec 31.

Abstract

Patient-reported outcome data have moved from the realm of research to center stage in efforts to provide patient-centered care. In a Danish context, health authorities are seeking to promote and standardize the use of patient-reported outcome data. This involves normative articulations of what counts as in a healthcare system characterized by intensified data-sourcing. Based on ethnographic material, I suggest that an assemblage of actors, both human and technological, has accomplished the articulation of meaningful data work, with patient-reported outcome as being dependent on the active application of data in clinical trajectories-in contrast to supplying data "passively" for secondary use for research or governance. This normative articulation of "Active patient-reported outcome" legitimizes the Danish patient-reported outcome assemblage by showing alignment of the concerns of patients, clinicians and health authorities. At the same time, "Active patient-reported outcome" foreshadows challenges in making data work meaningful in local practice.

摘要

患者报告的结局数据已经从研究领域走向中心舞台,以提供以患者为中心的护理。在丹麦背景下,卫生当局正在努力促进和规范患者报告的结局数据的使用。这涉及到在以强化数据来源为特征的医疗体系中,对什么算作“有意义的”进行规范性阐述。基于民族志材料,我认为,一系列的参与者,包括人和技术,已经完成了有意义的数据工作的阐述,患者报告的结局取决于在临床轨迹中积极应用数据,而不是为了研究或治理的二次使用而“被动”提供数据。这种对“主动患者报告的结局”的规范性阐述通过展示患者、临床医生和卫生当局关注的一致性,使丹麦患者报告的结局组合合法化。同时,“主动患者报告的结局”预示着在使数据工作在当地实践中具有意义方面面临挑战。

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