Introduction: Currently, abundances of highly relevant health data are locked up in data silos due to decentralized storage and data protection laws. The health data cooperative (HDC) model is established to make this valuable data available for societal purposes. The aim of this study is to analyse the HDC model and its potentials and challenges. Results: An HDC is a health data bank. The HDC model has as core principles a cooperative approach, citizen-centredness, not-for-profit structure, data enquiry procedure, worldwide accessibility, cloud computing data storage, open source, and transparency about governance policy. HDC members have access to the HDC platform, which consists of the “core,” the “app store,” and the “big data.” This, respectively, enables the users to collect, store, manage, and share health information, to analyse personal health data, and to conduct big data analytics. Identified potentials of the HDC model are digitization of healthcare information, citizen empowerment, knowledge benefit, patient empowerment, cloud computing data storage, and reduction in healthcare expenses. Nevertheless, there are also challenges linked with this approach, including privacy and data security, citizens’ restraint, disclosure of clinical results, big data, and commercial interest. Limitations and Outlook: The results of this article are not generalizable because multiple studies with a limited number of study participants are included. Therefore, it is recommended to undertake further elaborate research on these topics among larger and various groups of individuals. Additionally, more pilots on the HDC model are required before it can be fully implemented. Moreover, when the HDC model becomes operational, further research on its performances should be undertaken.

中文翻译：

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健康数据合作模式的潜力和挑战


简介：目前，由于分散存储和数据保护法，大量高度相关的健康数据被锁定在数据孤岛中。健康数据合作（HDC）模型的建立是为了使这些有价值的数据可用于社会目的。本研究的目的是分析 HDC 模型及其潜力和挑战。结果：HDC 是一个健康数据库。 HDC模型的核心原则是合作方式、以公民为中心、非营利结构、数据查询程序、全球可访问性、云计算数据存储、开源和治理政策透明度。 HDC会员可以访问HDC平台，该平台由“核心”、“应用商店”和“大数据”组成。这分别使用户能够收集、存储、管理和共享健康信息，分析个人健康数据，并进行大数据分析。 HDC 模型已确定的潜力包括医疗信息数字化、公民赋权、知识效益、患者赋权、云计算数据存储和医疗费用减少。然而，这种方法也存在一些挑战，包括隐私和数据安全、公民约束、临床结果的披露、大数据和商业利益。局限性和展望：本文的结果不可推广，因为包含了多项研究，且研究参与者的数量有限。因此，建议在更大的、不同的个体群体中对这些主题进行进一步深入的研究。此外，HDC 模型还需要更多试点才能全面实施。此外，当HDC模型投入运行时，应该对其性能进行进一步的研究。