Bridging the valley of death: balancing value creation and capture in health data sharing platforms

Health data sharing platforms aim to improve medical evidence and lower costs by combining data for secondary use. Emerging from public, or public-private initiatives, these platforms face a challenge in sustaining beyond initial funding. The dominant view in platform literature implies that platforms should strive for network effects to capture value. However, recent studies suggest that maximizing network effects does not explain how platforms can achieve long-term viability. Particularly in healthcare, with privacy concerns and changing regulatory frameworks, platforms often fail entering the commercialization phase. This systematic review encompassing 35 articles and 29 identified health data sharing platforms analyzes how they can achieve long-term viability. 79 percent of the identified platforms disclose public funding after the development phase, indicating that it is still challenging. Therefore, we developed a conceptual model of economic sustainability, explaining how to balance value creation and capture, enabling downstream value capture and developing capabilities for resilience.