Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Feb 8, 2024
Date Accepted: Feb 18, 2025
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Balancing Risks and Opportunities: Navigating the Evolving Landscape of Data-for-Health Ecosystems in Healthcare
ABSTRACT
Despite major progress in digitization of healthcare systems, data sharing, and interoperability, the true potential of data in healthcare is yet to be fully realized. This underscores the need for data-for-health ecosystems that enable technologies and systems to collect and share valuable data for decision-making in a timely, safe, efficient, and sustainable manner. However, risks related to privacy, data protection, security, democratic governance, and exclusion exist in currently evolving ecosystems. Poor interoperability and limited data sharing restrict data access and usability, while non-official sources, such as social media platforms, become crucial to timely gathering, analysing, and sharing information. Building a safe and robust data-for-health ecosystem requires therefore better data governance, interoperability, citizen engagement, and actions to build public trust. Issues in data governance revolve around inconsistent approaches to data security in the public sector and concerns about data commodification in the private sector, hindering access, usage of data, and public trust. Reframing data as a common good and increasing transparency of the acquisition and processing pathways are crucial. The lack of common platforms and standards for data sharing hampers collaboration during public health emergencies as well as during the ‘peace times’ of normal healthcare provision. Application Programming Interfaces (APIs) can facilitate data access, especially for real-time streams, but they are underutilized. Addressing concerns about data use and public benefit, data literacy, technology access, and meaningful citizen engagement are key to negotiating an effective and socially acceptable path forward. Overall, the risks and opportunities across the ecosystem must be held in balance, to facilitate data sharing while safeguarding individuals. Norms and standards are needed, to be defined and enforced by international multi-sector leadership, due to multinational involvement and transboundary data-sharing opportunities.
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