Strategic Oversight Across Real-World Health Data Initiatives in a Complex Health Data Space: A Call for Collective Responsibility

Abstract

Reusing real-world health data is useful, but challenging. Multiple initiatives exist and more are continuously arising to overcome these challenges, but the strategic oversight across these initiatives is lacking, which leads to a fragmented ecosystem. An overview of which initiatives that work on unlocking real-world health data, making this data accessible for research and/or innovation and/or policy and getting an idea about which aspect of the ecosystem the initiatives are working on would be very helpful. It could help in figuring out how initiatives can work in synergy in order that consortia can be formed more efficiently. We tried to create an overview, resulting in a static list, but have thereby run into many problems and difficulties and have noticed that the information is even more scattered than expected, and often ambiguous and unclear. This paper highlights the need for strategic oversight in our complex health data space, defines key challenges and focuses on solutions and strategies for overcoming these challenges, and aims to guide the future of health data research and innovation on a global scale, offering a valuable resource for stakeholders in the field.