结直肠癌肝转移患者对贯穿性护理电子咨询的看法：一项定性研究：隐私真的是个问题吗？
Perspectives of patients with colorectal cancer liver metastases on e-consultation in transmural care: a qualitative study : Is privacy really an issue?
机构信息
Department of Surgery, Cancer Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, de Boelelaan 1117, 1081 HV, Amsterdam, The Netherlands.
Department of Strategy and Innovation, Cancer Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, de Boelelaan 1117, 1081 HV, Amsterdam, The Netherlands.
出版信息
BMC Health Serv Res. 2023 May 25;23(1):541. doi: 10.1186/s12913-023-09408-5.
BACKGROUND
Comprehensive cancer networks have been established to deliver high-quality care for patients with cancer. Logistic challenges are faced, when patients need to be referred for specialized treatments. Despite strengthened privacy legislations, digital platforms are increasingly used to consult specialists from dedicated liver centers or refer patients with colorectal cancer liver metastases (CRLM) for local treatment strategies. This qualitative study aimed to explore the perspectives of patients with CRLM regarding e-consultation of transmural specialists.
METHODS
A focus group study was conducted. Patients referred from regional hospitals to an academic liver center for treatment of CRLM were asked to participate. Focus group discussions were audio-recorded and transcribed verbatim. A thematic content analysis of data was conducted, comprising open, axial, and selective coding of the transcripts. The consolidated criteria for reporting qualitative research (COREQ) were used.
RESULTS
Two focus groups were held, involving 11 patients and 8 relatives. Three major themes were identified with regard to e-consultation in transmural care: 'data management', 'expertise', and 'information and coordination'. Confidence in the expertise of physicians appeared most important during the course of treatment, as patients experienced uncertainty after diagnosis of cancer. Despite the privacy risks, use of digital communication platforms to contact experts in the field were strongly endorsed to improve eligibility for potentially curative treatment. Moreover, e-consultation of specialists may reduce waiting times, due to effective coordination of care.
CONCLUSION
Initiatives to improve medical data transfer between care providers were encouraged to achieve effective coordination of oncological care. The potential hazard of privacy violation associated with digital data exchange is accepted by patients and their relatives, provided that use of digital data improves patient's own health care, research or education.
背景
综合癌症网络的建立是为了为癌症患者提供高质量的护理。当患者需要转诊接受专业治疗时，会面临后勤方面的挑战。尽管隐私法规得到了加强，但数字平台越来越多地被用于咨询专门的肝脏中心的专家，或转介结直肠癌肝转移（CRLM）患者以制定局部治疗策略。这项定性研究旨在探讨 CRLM 患者对跨学科专家电子咨询的看法。
方法
进行了焦点小组研究。邀请从区域医院转诊到学术肝脏中心治疗 CRLM 的患者参加。对焦点小组讨论进行了录音和逐字转录。对数据进行了主题内容分析，包括对转录本进行开放式、轴向和选择性编码。使用了定性研究报告的统一标准（COREQ）。
结果
进行了两次焦点小组讨论，共涉及 11 名患者和 8 名亲属。在跨学科护理中的电子咨询方面确定了三个主要主题：“数据管理”、“专业知识”和“信息和协调”。在治疗过程中，对医生专业知识的信心似乎最为重要，因为患者在诊断出癌症后会感到不确定。尽管存在隐私风险，但强烈支持使用数字通信平台联系该领域的专家，以提高潜在治愈性治疗的资格。此外，电子咨询专家可以通过有效协调护理来减少等待时间。
结论
鼓励采取措施改善护理提供者之间的医疗数据传输，以实现肿瘤护理的有效协调。患者及其亲属接受了与数字数据交换相关的隐私侵犯的潜在危险，只要使用数字数据能够改善患者自身的医疗保健、研究或教育。
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