University of Copenhagen, Copenhagen, Denmark.
Deakin University, Melbourne, VIC, Australia.
Soc Stud Sci. 2023 Aug;53(4):522-544. doi: 10.1177/03063127231164345. Epub 2023 Apr 25.
People are increasingly able to generate their own health data through new technologies such as wearables and online symptom checkers. However, generating data is one thing, interpreting them another. General practitioners (GPs) are likely to be the first to help with interpretations. Policymakers in the European Union are investing heavily in infrastructures to provide GPs access to patient measurements. But there may be a disconnect between policy ambitions and the everyday practices of GPs. To investigate this, we conducted semi-structured interviews with 23 Danish GPs. According to the GPs, patients relatively rarely bring data to them. GPs mostly remember three types of patient-generated data that patients bring to them for interpretation: heart and sleep measurements from wearables and results from online symptom checkers. However, they also spoke extensively about data work with patient queries concerning measurements from the GPs' own online Patient Reported Outcome system and online access to laboratory results. We juxtapose GP reflections on these five data types and between policy ambitions and everyday practices. These data require substantial recontextualization work before the GPs ascribe them evidential value and act on them. Even when they perceived as actionable, patient-provided data are not approached as measurements, as suggested by policy frameworks. Rather, GPs treat them as analogous to symptoms-that is to say, GPs treat patient-provided data as subjective evidence rather than authoritative measures. Drawing on Science and Technology Studies (STS) literature,we suggest that GPs must be part of the conversation with policy makers and digital entrepreneurs around when and how to integrate patient-generated data into healthcare infrastructures.
人们越来越能够通过新技术(如可穿戴设备和在线症状检查器)生成自己的健康数据。然而,生成数据是一回事,解释数据则是另一回事。全科医生(GP)很可能是最先帮助解释数据的人。欧盟的政策制定者正在大力投资基础设施,以便为 GP 提供患者测量数据的访问权限。但是,政策目标和 GP 的日常实践之间可能存在脱节。为了调查这一点,我们对 23 名丹麦全科医生进行了半结构化访谈。根据 GP 的说法,患者相对较少将数据带给他们。GP 主要记得患者为他们解释而带来的三种类型的患者生成数据:来自可穿戴设备的心脏和睡眠测量值以及在线症状检查器的结果。但是,他们也广泛地谈到了与 GP 自己的在线患者报告结果系统和在线访问实验室结果有关的患者查询的数据工作。我们将 GP 对这五种数据类型的思考与政策目标和日常实践进行了并列对比。在 GP 将这些数据归因于证据价值并据此采取行动之前,这些数据需要进行大量的重新语境化工作。即使他们认为这些数据具有可操作性,患者提供的数据也不会被视为测量值,正如政策框架所建议的那样。相反,GP 将其视为类似于症状的东西,也就是说,GP 将患者提供的数据视为主观证据,而不是权威的测量值。借鉴科学技术研究(STS)文献,我们建议 GP 必须参与与政策制定者和数字企业家的对话,讨论何时以及如何将患者生成的数据整合到医疗保健基础设施中。