Better Together 2025

The importance of trust for the health data network economy BOX 2 Trust is the cornerstone of a successful health data network economy, enabling sustainable growth and meaningful collaboration among stakeholders. Foundation for effective collaboration Trust-based frameworks – including structured policies and standards for data privacy, governance and security – are essential for promoting collaboration. They help regions and organizations position themselves as global leaders in health data by ensuring transparency and ethical data sharing. Driving innovation Trust accelerates innovation by encouraging the creation of environments in which stakeholders cooperate more effectively. It enables comprehensive patient records that improve diagnosis, enhance personalized care and fuel advances in AI-driven healthcare solutions. Enhanced data sharing and patient participation Strong trust frameworks encourage patients to share complete and accurate health data, improving treatment outcomes and enabling better AI-powered predictions. When privacy and security are prioritized, data sharing increases, leading to more robust healthcare insights. Improved crisis management In health crises such as pandemics, trusted data-sharing systems enable quick response times and effective resource allocation, improving resilience and adaptability. Trust also ensures that critical health data is exchanged securely across institutions, boosting public health efforts. Sustained growth of health data networks As trust strengthens within the system, more participants join, leading to scalable growth. Increased participation enhances the collective value of the health data network, driving long-term impact and creating new opportunities for global health collaboration.Understanding the critical factors for successful health data use, the DHT Community conducted a comprehensive analysis of the eight enablers illustrated in Figure 1. While all enablers were recognized as pivotal, the community prioritized four that it is essential to mobilize first to promote a successful network economy. –Cultural mindset change: Beyond technical and governance enablers, shifting attitudes to data sharing is crucial. Many healthcare systems and organizations are traditionally cautious about sharing data due to concerns over competition, privacy or reputational risk. Bold leadership is needed within the healthcare sector to champion and implement actions that drive collective benefits through health data sharing, embedding a culture of openness within organizations and across the industry. Achieving this requires well- designed change-management programmes that integrate education, effective communication and active leadership engagement. These efforts should be tailored to address the specific cultural and geographical contexts of each region, ensuring a comprehensive approach that promotes openness and collaboration throughout the healthcare sector.  –Value in data sharing: Creating tangible incentives for stakeholders to share health data is vital for achieving meaningful collaboration. Without clear value propositions, organizations may view data sharing as a burden rather than an opportunity. Identifying specific use cases and effectively validating and communicating the benefits – from individual projects to the broader ecosystem – can help drive the shift towards a more collaborative approach.  –Data rights and governance: Establishing a transparent and secure governance framework is fundamental to managing the complexities of health data sharing. Without clear rules and enforcement, trust among stakeholders and patients can erode, limiting collaboration. Public- sector organizations should focus on setting standards that create equal playing fields for all organizations, ensuring appropriate levels of sharing and consuming.  –Standardization and interoperability: Health data exists across multiple systems, applications and formats, leading to fragmentation. Without standardization and interoperability,21 it becomes challenging for stakeholders to seamlessly exchange and use data across regions, organizations and platforms. Public-sector organizations should focus on reinforcing and aligning existing standards to create a level playing field for all participants, enabling appropriate levels of data sharing and access throughout the system. An example of successful implementation is Estonia’s X-Road,22 an advanced interoperability platform that enables secure and seamless data exchange between diverse systems, demonstrating how effective standardization can drive a connected health ecosystem. 3.2 Priority enablers for health data collaboration Better Together: Building a Global Health Network Economy through Data Collaboration 12