Video courtesy of the World Economic Forum

Breaking barriers to health data — World Economic Forum, 2020-2022

The discovery of diagnoses and treatments that could save or improve lives requires access to large data sets, but such access has historically been blocked by variations in data security, patient privacy and data interoperability issues globally. Over the course of two years, I served as a Project Lead at the World Economic Forum to oversee the Breaking Barriers to Health Data project with genomic institutions in Australia, Canada, the UK and US. Our goal was to create a model to share rare disease data across borders in a federated data system. Allowing access to health data sets is not particularly difficult technically, but requires active partnership and planning to execute.

I helped to pen 3 white papers providing an overview of how to federate genomic data to accelerate rare disease diagnoses:

The Technology of Federated Data Systems

This was the first of three papers in the series, which explains the technology used to federate health data.

The Economics of Federating Health Data

This paper examines the incentives to establish such a federated data system, showing a return on investment could be possible across four major areas of benefit:

Diagnostic benefit: The identification of pathogenic or likely pathogenic variants in known disease genes

Clinical benefit: Changes in the medical or surgical management of patients as a result of the diagnosis being made, for example: the assignment of therapies (therapeutic benefit) or improvements in the management of patients in the absence of therapy assignment (management benefit)

Clinical trial benefit: Changes related to the improvement of clinical trial operations

Personal benefit: The presence of non-clinical outcomes that are important from a personal point of view to a person with a rare disease or who is affected by a rare disease. These outcomes may relate to the intrinsic value of information, the knowledge about the condition and the opportunity to make plans for the family or the future.

How to make it happen: Building a partnership to enable federated data systems

Over the course of two years, the World Economic Forum led the Breaking Barriers to Health Data project with genomic institutions in Australia, Canada, the UK and US to create a model to share rare disease data across borders in a federated data system.

MY RARE STORY & ADVOCACY JOURNEY

Breaking barriers to health data — World Economic Forum, 2020-2022

I helped to pen 3 white papers providing an overview of how to federate genomic data to accelerate rare disease diagnoses: