Jitka Kolarova
Lead, Health & Healthcare Innovation, World Economic Forum
AI could revolutionise healthcare, saving lives and personalising care. However, without bold action to fix broken data-sharing systems, we’re sitting on insights that could already be changing the world.
The promise of AI in healthcare relies on access to vast amounts of high-quality health data. Yet, despite exponential growth in health data across healthcare and consumer platforms, its practical usage lags behind. Estimates suggest only one-third of existing data is used by AI and genAI, and the gap is widening.
Broken trust, broken systems
A key issue is data governance. Health data is deeply personal and biologically unique, yet users often consent to share it without fully grasping how it might be used, resold or exposed. The recent bankruptcy of a leading consumer genetic testing company with 15 million customers has reignited concerns about data security, patient trust and the commercialisation of health data.
State attorneys advised consumers to delete their data, with social media users echoing concerns and fuelling public scepticism. This exposed weaknesses in current protections and the urgent need for stronger, more comprehensive policies, especially when organisations managing sensitive data face financial instability.
Health data is critical to
AI-driven healthcare innovation.
Health data is not just a business asset
Health data is also viewed as a competitive asset, further impeding data sharing and raising ethical questions about monetisation. Many health tech firms rely on business models that sell anonymised user data for research or commercial use. Recent events have intensified debate: should individuals have more control over how their data is used? Should companies profit from it?
To address these concerns, the perception of health data must shift from a commodity to a source of collective insight. Promoting the value of data-derived outcomes, rather than data ownership, could encourage more collaboration. A new value model built on data exchange networks, aligned with shared global health goals, could mitigate the ethical risks of commercialisation.
The path forward: trust, ethics, collaboration
Health data is critical to AI-driven healthcare innovation. Poor sharing comes at a steep cost in lost opportunities. Regulatory clarity, ethical standards and industry-wide collaboration are essential for building trust. The World Economic Forum is advancing this agenda through its Digital Healthcare Transformation initiative, which unites public and private partners to scale AI responsibly and foster collaboration in health data.
