Powell Daniel, Asad Laiba, Zavaglia Elissa, Ferrari Manuela
Faculty of Law, McGill University, Montreal, QC, Canada.
The Douglas Research Centre, 6875 Boulevard LaSalle (Perry C3 E-3102), Montreal, QC, H4H 1R3, Canada, 1 5147616131 ext.3445.
JMIR Form Res. 2025 Jan 3;9:e60832. doi: 10.2196/60832.
With the increased use of digital health innovations in Canadian health care, educating health care users, professionals, and researchers on the ethical challenges and privacy implications of these tools is essential. The Datum project, funded by the Fondation Barreau du Quebec, was created to help these actors better understand legal and ethical issues regarding the collection, use, and disclosure of digital health data for the purposes of scientific research, thereby enhancing literacy around data privacy. The project consists of a multimedia website divided into legislation and policy documents and narrative-based video content. Users can access the core legislation and policies governing the collection and use of health care data geared toward researchers and health practitioners. Users can also view the narrative-based video content explaining key concepts related to digital health data. The Datum project makes an original contribution to the field of law and ethics in health science research by using novel approaches, such as learning health systems and data banks, to improve equity in health care delivery and by generating multimedia content aimed at encouraging health care users to become better consumers and supporting the collective use of their data. The Datum project also promotes digital literacy as a digital communication tool, which has the significant potential to improve health outcomes, bridge the digital divide, and reduce health inequities.
随着数字健康创新在加拿大医疗保健领域的使用增加，让医疗保健用户、专业人员和研究人员了解这些工具所带来的伦理挑战和隐私影响至关重要。由魁北克律师基金会资助的“数据项目”旨在帮助这些参与者更好地理解有关为科研目的收集、使用和披露数字健康数据的法律和伦理问题，从而提高数据隐私方面的知识水平。该项目包括一个多媒体网站，分为立法和政策文件以及基于叙事的视频内容。用户可以获取面向研究人员和医疗从业者的有关医疗保健数据收集和使用的核心立法和政策。用户还可以观看基于叙事的视频内容，这些内容解释了与数字健康数据相关的关键概念。“数据项目”通过采用诸如学习健康系统和数据库等新颖方法，为健康科学研究中的法律和伦理领域做出了原创性贡献，以改善医疗保健服务的公平性，并通过生成多媒体内容来鼓励医疗保健用户成为更明智的消费者并支持对其数据的集体使用。“数据项目”还将数字素养作为一种数字通信工具加以推广，这具有改善健康结果、弥合数字鸿沟和减少健康不平等的巨大潜力。
