Balancing stakeholder interests and paradoxes in health data sharing within health ecosystems

Fan Wang, Mahmoud Mohamed, Petri Ahokangas, Pasi Karppinen
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Abstract

Personal health data sharing can facilitate value co-creation between multiple stakeholders, including individuals, public organisations, private companies, research institutes, and policymakers. Yet, when companies are involved in sharing health data to develop health-related solutions, it can lead to conflicts and contradictions between stakeholders. We apply a qualitative research approach over two cases in the Finnish healthcare sector to explore the tensions and contradictions in sharing personal health data that companies can utilise in the development of new products/or services in the healthcare sector. We identify the tensions and paradoxes from multiple stakeholders’ perspectives and provide management approaches on three levels: (I) The micro-level focusing on individuals as users, (II) The meso-level concerns businesses operating within the digital health ecosystem. (III) The macro-level addresses broader societal impact and policies governing the secondary use of health data.
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平衡健康生态系统内健康数据共享中利益相关者的利益和悖论
个人健康数据共享可促进个人、公共组织、私营公司、研究机构和政策制定者等多个利益相关者之间的价值共创。然而,当公司参与共享健康数据以开发与健康相关的解决方案时,可能会导致利益相关者之间的冲突和矛盾。我们在芬兰医疗保健领域的两个案例中采用了定性研究方法,以探讨公司在开发医疗保健领域新产品/服务时共享个人健康数据时存在的紧张关系和矛盾。我们从多个利益相关者的角度出发,确定了紧张关系和矛盾,并提供了三个层面的管理方法:(I)微观层面关注作为用户的个人,(II)中观层面关注在数字健康生态系统中运营的企业。(III) 宏观层面涉及更广泛的社会影响和管理健康数据二次使用的政策。
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