Advancing precision medicine depends on the ability to collect and glean insights from genetic and other biological data, behavioural information, and the environments in which people live and work. By combining insights from this data, we aim to diagnose disease and tailor treatments with increasing specificity, improve the quality and effectiveness of care, and reduce costs.
However, the complicated and dynamic landscape of data privacy and localization laws adds great complexity to the collection and utilization of data—both between countries and even within single governments. Advances in mobile technologies, connected devices, machine learning, informatics, and cryptography, among others, offer opportunities to improve the ability of the health and healthcare community to access and use more important, and distributed, data sources. Such data is necessary to support development, research, regulation, clinical decisions, and the overall impact 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 acess of data across borderss and raises concerns around data privacy and consent.
One potential solution to these challenges is the use of a federated data system, in which insights can be viewed across distributed data sets without the need for data to be transferred.
The Breaking Barriers to Health Data project aims to create a scalable framework to support the effective and responsible use of federated data systems. This framework can be applied to different types of data, multiple use cases, different jurisdictions, and other industry areas. Such work will build on models being tested in other industries (e.g. telecoms and transport).
The goal is to mitigate or eliminate key barriers 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) A technical proof-of-concept based on federated or distributed data sets, potentially including the use of smart contracts or other tokenized credentialing, and pre-vetted algorithmic queries that can generate insights without transferring personally identifiable information
(2) A policy playbook that identifies the key regulatory and legal hurdles posed by this approach, and then suggests policies and frameworks that can overcome these challenges and provide a pathway to scale this approach
(3) Guidelines for accessing and using genomic information and insights enabled by this framework in an ethical and responsible manner
The Centre for the Fourth Industrial Revolution is partnering with a number of leading public-sector institutions and private companies to pilot the above frameworks and share learning to help scale their effective adoption more broadly.