Understanding value in health data ecosystems: A review of current evidence and ways forward.

The potential of health data to improve the efficiency and effectiveness of health research and development, healthcare delivery, and health systems more widely is substantial. There are many initiatives across the EU that are experimenting with ways to capture value and address the nexus of technical, legal, ethics-related, governance and data protection-related, and cultural challenges to delivering potential benefits for society and the economy. The field of health data research and policy is highly dynamic and there is a need for further reflection, thematic learning and evaluation to better understand how to create and connect receptive places, to inform future interventions and to identify transferable lessons. Our research emphasises that realising the benefits of health data at scale will require: a simultaneous focus on the technological and structural conditions that are required; collaboration and coordination to transform working cultures and build health and care workforce and citizen capacity to engage with data; and efforts to ensure that policy, industry, and research communities respond to public concerns, needs, and expectations in a timely and sustained manner. The global community of individuals and organisations with a stake in health data will also need to consider how progress can benefit different populations across the world in an equitable manner.