Baum Eleonore, Thiel Christian, Kobleder Andrea, Bernhardsgrütter Daniela, Engst Ramona, Maurer Carola, Koller Antje
Institute of Applied Nursing Science, School of Health, Eastern Switzerland University of Applied Sciences, St.Gallen, Switzerland.
Department of Epidemiology and Public Health, Swiss Tropical and Public Health Institute, Allschwil, Switzerland.
JMIR Cancer. 2024 Jul 29;10:e52985. doi: 10.2196/52985.
A digital diary in the form of a mobile messenger service offers a novel method for data collection in cancer research. Little is known about the things to consider when using this data collection method in clinical research for patients with cancer. In this Viewpoint paper, we discuss the lessons we learned from using a qualitative digital diary method via a mobile messenger service for data collection in oncology care. The lessons learned focus on three main topics: (1) data quality, (2) practical aspects, and (3) data protection. We hope to provide useful information to other researchers who consider this method for their research with patients. First, in this paper, we argue that the interactive nature of a digital diary via a messenger service is very well suited for the phenomenological approach and produces high-quality data. Second, we discuss practical issues of data collection with a mobile messenger service, including participant and researcher interaction. Third, we highlight corresponding aspects around technicalities, particularly those regarding data security. Our views on data privacy and information security are summarized in a comprehensive checklist to inform fellow researchers on the selection of a suitable messenger service for different scenarios. In our opinion, a digital diary via a mobile messenger service can provide high-quality data almost in real time and from participants' daily lives. However, some considerations must be made to ensure that patient data are sufficiently protected. The lessons we learned can guide future qualitative research using this relatively novel method for data collection in cancer research.
以移动即时通讯服务形式存在的数字日记为癌症研究中的数据收集提供了一种新方法。对于在癌症患者临床研究中使用这种数据收集方法时需要考虑的事项，我们知之甚少。在这篇观点论文中，我们讨论了通过移动即时通讯服务使用定性数字日记方法在肿瘤护理中进行数据收集所学到的经验教训。所学到的经验教训集中在三个主要主题上：（1）数据质量，（2）实际操作方面，以及（3）数据保护。我们希望为其他考虑将这种方法用于其患者研究的研究人员提供有用信息。首先，在本文中，我们认为通过即时通讯服务的数字日记的交互性质非常适合现象学方法，并能产生高质量的数据。其次，我们讨论了使用移动即时通讯服务进行数据收集的实际问题，包括参与者与研究人员的互动。第三，我们强调了围绕技术细节的相应方面，特别是那些关于数据安全的方面。我们对数据隐私和信息安全的观点总结在一份综合清单中，以告知同行研究人员如何为不同场景选择合适的即时通讯服务。我们认为，通过移动即时通讯服务的数字日记几乎可以实时地从参与者的日常生活中提供高质量的数据。然而，必须进行一些考虑以确保患者数据得到充分保护。我们所学到的经验教训可以指导未来在癌症研究中使用这种相对新颖的数据收集方法进行定性研究。
