Introduction: Structuring patient and practice data into episodes formed the foundation of the earliest evidence base of family medicine. We aim to make patients' narratives part of the evidence base for family medicine by incorporating coded and structured information on the patient's reason to visit the family physician (FP) and adding the patient's personal and contextual characteristics to routine registration data. This documentation allows studies of relations between morbidity and elements of the patient story, providing more insight into the range of problems presented to primary care and in the patient-centeredness applied by FPs. Methods: The Dutch Practice-Based Research Network (PBRN), named FaMe-Net, is the world's oldest PBRN. Seven Dutch family practices provide regular primary care and participate in the PBRN. It contains all morbidity data of the approximately 40,000 listed patients (308,000 patient-years and 2.2 million encounters from 2005 until 2019). All information belonging to 1 health problem is ordered in 1 episode. Morbidity (diagnoses), reasons for encounter (RFE), and interventions are coded according to the International Classification of Primary Care (ICPC-2). Registration occurs within the electronic health record (EHR), specially designed to facilitate the extensive registration for the PBRN. Since 2016, the network expanded routine registration with the duration of symptoms and coded personal and contextual characteristics (eg, country of birth, level of education, family history, traumatic events) obtained through the self-reported ‘context survey’ of listed patients. These data are added to the EHR. Registered data are extracted from the EHR and processed for scientific research. We present data on the differences in RFEs of the most prominent symptoms of COVID-19 between 2019 and 2020; the relation between the diagnosis of pneumonia and presentation of the symptom ‘cough,’ and how personal determinants influence the chances of final diagnoses. Lastly, we show the relation of self-reported abuse with patient's contact frequency and psychosocial problems. Results: Prompt introduction of registration rules brought insight into COVID-19-related symptoms early in the pandemic. In March 2020, symptoms related to COVID-19 were presented more often than in March 2019. Chronic conditions and prevention showed a collapsing contact frequency. Telephone, email, and video consultations increased from 31% to 53%. Episodes of pneumonia most frequently started with the RFE ‘cough.’ A combination of ‘cough’ and ‘fever’ as RFE increases the likelihood of pneumonia, as does cough in the presence of comorbid COPD among older men. The prevalence of pneumonia is higher among patients with low socioeconomic status. Discussion: The Dutch PBRN FaMe-Net has started to add elements of patients' narratives and context to decades of morbidity registration, creating options for a scientific approach to primary care's core values. Assumptions of ‘pre/post chances’ of the final diagnosis, already existing implicitly in FPs minds, can be elaborated and quantified by investigating the associations between multiple registered variables, including parts of patients' ‘stories.’ This way, we aim to make visible what is intuitively already known by FPs.

中文翻译：

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在荷兰将患者叙述有目的地纳入病历

简介：将患者和实践数据组织成片段构成了家庭医学最早的证据基础。我们的目标是通过将患者就诊家庭医生 (FP) 的原因的编码和结构化信息结合起来，并将患者的个人和背景特征添加到常规注册数据中，从而使患者的叙述成为家庭医学证据基础的一部分。该文档允许研究发病率与患者故事元素之间的关系，从而更深入地了解初级保健所面临的问题范围以及 FP 所应用的以患者为中心的问题。方法：荷兰基于实践的研究网络 (PBRN)，名为 FaMe-Net，是世界上最古老的 PBRN。七家荷兰家庭诊所提供定期初级保健并参与 PBRN。它包含列出的大约 40,000 名患者的所有发病率数据（从 2005 年到 2019 年，308,000 名患者年和 220 万次就诊）。属于 1 个健康问题的所有信息都在 1 集中排序。发病率（诊断）、就诊原因 (RFE) 和干预措施根据国际初级保健分类 (ICPC-2) 进行编码。注册发生在电子健康记录 (EHR) 中，专门用于促进 PBRN 的广泛注册。自 2016 年以来，该网络通过对所列患者的自我报告“背景调查”获得的症状持续时间和编码的个人和背景特征（例如，出生国家、教育水平、家族史、创伤事件）扩大了常规登记。这些数据被添加到 EHR。注册数据从 EHR 中提取并处理用于科学研究。我们提供了有关 2019 年至 2020 年 COVID-19 最突出症状的 RFE 差异的数据；肺炎的诊断与“咳嗽”症状的表现之间的关系，以及个人决定因素如何影响最终诊断的机会。最后，我们展示了自我报告的虐待与患者接触频率和社会心理问题的关系。结果：注册规则的及时引入使人们在大流行早期就了解了与 COVID-19 相关的症状。2020 年 3 月，与 COVID-19 相关的症状比 2019 年 3 月更频繁地出现。慢性病和预防显示接触频率下降。电话、电子邮件和视频咨询从 31% 增加到 53%。肺炎发作最常以 RFE“咳嗽”开始。“咳嗽”和“发烧”的组合作为 RFE 会增加肺炎的可能性，老年男性合并 COPD 时咳嗽也是如此。社会经济地位低的患者肺炎患病率较高。讨论：荷兰 PBRN FaMe-Net 已开始在数十年的发病率登记中添加患者叙述和背景的元素，为初级保健核心价值的科学方法创造选择。最终诊断的“前/后机会”假设已经隐含在 FP 的头脑中，可以通过调查多个注册变量（包括患者“故事”的一部分）之间的关联来详细阐述和量化。通过这种方式，我们的目标是让 FP 直观地已知的内容可见。