Why precision medicine won’t transform healthcare – but governance could

Collaboration of The European Sting with the World Economic Forum

Could precision medicine see a resurgence in the post-COVID era? Not without fixing longstanding policy and governance challenges like cross-border data access, ethical technology development, genomic data policies and viability of diagnostics development.

That was the message from more than 40 global experts from across the healthcare ecosystem recently. They took a hard look at the barriers standing in the way of precision medicine approaches over the last 12 months part of the World Economic Forum’s Global Fourth Industrial Revolution Councils. The barriers they identified were not in science and technology but in policy and governance, ranging from laws to standards that set the “rules of the road” for corporations, governments and international organizations.

How is the World Economic Forum bringing data-driven healthcare to life?

The application of “precision medicine” to save and improve lives relies on good-quality, easily-accessible data on everything from our DNA to lifestyle and environmental factors. The opposite to a one-size-fits-all healthcare system, it has vast, untapped potential to transform the treatment and prediction of rare diseases—and disease in general.

But there is no global governance framework for such data and no common data portal. This is a problem that contributes to the premature deaths of hundreds of millions of rare-disease patients worldwide.

The World Economic Forum’s Breaking Barriers to Health Data Governance initiative is focused on creating, testing and growing a framework to support effective and responsible access – across borders – to sensitive health data for the treatment and diagnosis of rare diseases.

The data will be shared via a “federated data system”: a decentralized approach that allows different institutions to access each other’s data without that data ever leaving the organization it originated from. This is done via an application programming interface and strikes a balance between simply pooling data (posing security concerns) and limiting access completely.

The project is a collaboration between entities in the UK (Genomics England), Australia (Australian Genomics Health Alliance), Canada (Genomics4RD), and the US (Intermountain Healthcare).

As a result of their review, these expert Council Members had some tough words for the healthcare systems and the policymakers who need to adapt – and quickly – to accelerate healthcare systems’ movement toward precision medicine and better address a range of health issues from cancer to the current COVID-19 crisis.

“Unfortunately, more than half of the world’s population still has no access to precision medicine and is unable to reap the benefits,” wrote the Council in the Precision Medicine Vision Statement, released this week. “We must be ever vigilant about increasing the capabilities of many countries and populations to join this global movement towards more personalized and targeted ways of screening, preventing, diagnosing, treating and curing patients with disease.”

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