Accelerating precision medicine depends on the ability to collect and glean insight from genetic and other biological data, behavioural information and the environments in which people live and work. By combining insight from such data, we aim to diagnose disease and tailor treatments with increasing specificity and efficiency, improve the quality and effectiveness of care and reduce costs.
The complex and dynamic landscape of data privacy and localization laws complicates the collection, sharing and utilization of data – both between countries and within single governments or institutions.
Advances in mobile technologies, connected devices, machine learning, informatics and cryptography offer opportunities to improve the ability of the health and healthcare community to collect, access and use distributed data sources. Such data support development, research, regulation, clinical decisions and the overall delivery potential of precision medicine.
At the same time, the application of Fourth Industrial Revolution technologies raises new, or amplifies existing, governance and policy challenges related to the access to data across borders and raises concerns about data privacy and consent.
One potential immediate solution to this data access challenge is the use of a federated data system model in which insights can be gleaned by querying across distributed data sets without needing to move the data.
The Breaking Barriers to Health Data project aims to craft and test a scalable governance framework to support the effective and responsible use of federated data systems to advance rare disease diagnosis and treatment.
The first case study will focus on enabling cross-border access to rare disease genomic data between four countries. The framework will subsequently be tested for applicability using different types of data and use cases and in different jurisdictions.
The project also aims to test the hypothesis that federated systems can provide a useful way to navigate key barriers to sharing sensitive data and reduce friction when specific communities – such as the private sector, research institutes or public institutions – want to share or transfer health data across borders to support precision medicine.
This project will produce three core outputs:
1. An economic analysis of the return-on-investment of implementing a cross-border federated data system for health data. This deliverable was published on February 26, 2020. Read 'Global Data Access for Solving Rare Disease: A Health Economics Value Framework'.
2. A governance framework that enables cross-border queries between institutions in a federated system, while respecting and navigating key policies and regulations
3. A proof-of-concept that explores the technical and operational functionality involved in running a federated data system
The World Economic Forum is partnering with genomics institutes in the United Kingdom, the United States, Canada and Australia as they design and test a technical proof of concept in tandem with partnering with leading public-sector institutions, academics and the private sector to write an original framework to govern the federation.