Dees Marianne, Alkir-Yurt Sevde, Olthuis Gert, Braspenning Jozé
Radboud University Medical Centre, Radboud Institute for Health Sciences, IQ healthcare, Nijmegen, The Netherlands.
BMC Prim Care. 2025 Apr 22;26(1):119. doi: 10.1186/s12875-025-02805-1.
In several countries, patients have online access to medical records (open notes) contributing to patient engagement and healthcare outcomes. However, usage is still low. Healthcare professionals' viewpoints on open notes are under-represented in existing reviews. And a systematic framework to understand the implementation is lacking. Using the 'capability approach', we evaluated the value of open notes by examining influencing factors and capabilities (opportunities and challenges) of patients and staff in general practices.
Qualitative research was conducted in 10 Dutch general practices (19 healthcare professionals and 29 patients) that were included through purposive sampling aiming at a diversity of practices and patients. Three focus groups were held with primary care staff and 10 with patients, led by an experienced facilitator using a topic guide. Content analysis was used for the transcripts of the focus groups; coded in ATLAS.ti in three rounds by two researchers independently. The results were discussed with the research team to identify factors and capabilities that could affect the usability of open notes.
Personal, social, and environmental factors appeared to influence the use of open notes, such as digital and health literacy, social support from and within the practice, and legislation and regulation. Patients and healthcare professionals agreed on most of these factors. From the capabilities, four implementation themes were identified. First, ambiguity about ownership of medical records and concerns about data integrity should be addressed. Second, the change in practice organization and the care process caused by open notes need practical support. Third, fear of the unknown and unintended consequences of open notes must be considered. Fourth, the introduced change to the healthcare professional-patient relationship requires additional skills. These themes applied to both patients and healthcare professionals, but the differences became clear in the details.
The study provides insight into how patients and healthcare professionals experience open notes. Besides the practical barriers and facilitators, patients and healthcare professionals addressed four implementation themes that should guide the further implementation of open notes to improve patient engagement and health outcomes.
在一些国家，患者可在线访问病历（开放病历），这有助于提高患者参与度和改善医疗保健结果。然而，其使用率仍然较低。在现有综述中，医疗保健专业人员对开放病历的观点较少被提及。而且缺乏一个用于理解其实施情况的系统框架。我们采用“能力方法”，通过考察患者和全科医疗工作人员的影响因素及能力（机遇和挑战）来评估开放病历的价值。
在10家荷兰全科医疗诊所开展了定性研究（19名医疗保健专业人员和29名患者），通过目的抽样纳入，旨在涵盖不同类型的诊所和患者。与基层医疗工作人员进行了3次焦点小组讨论，与患者进行了10次焦点小组讨论，由经验丰富的主持人使用主题指南主持。对焦点小组讨论的文字记录进行内容分析；由两名研究人员独立分三轮在ATLAS.ti中进行编码。研究结果与研究团队进行了讨论，以确定可能影响开放病历可用性的因素和能力。
个人、社会和环境因素似乎会影响开放病历的使用，如数字素养和健康素养、诊所内部及外部的社会支持以及法律法规。患者和医疗保健专业人员在这些因素上大多达成一致。从能力方面来看，确定了四个实施主题。首先，应解决病历所有权的模糊性问题以及对数据完整性的担忧。其次，开放病历导致的诊所组织和护理流程的变化需要实际支持。第三，必须考虑对未知情况的恐惧以及开放病历的意外后果。第四，医疗保健专业人员与患者关系的引入性变化需要额外的技能。这些主题适用于患者和医疗保健专业人员，但在细节上差异明显。
该研究深入了解了患者和医疗保健专业人员对开放病历的体验。除了实际障碍和促进因素外，患者和医疗保健专业人员还提出了四个实施主题，这些主题应指导开放病历的进一步实施，以提高患者参与度和改善健康结果。
