COVID-19 Driving Cross-Border Collaboration

In recent months, we have witnessed a monumental shift towards cross-border scientific collaboration, with researchers from an array of disease specialties across the globe cooperating together by sharing knowledge and resources in an effort to accelerate the discovery of a safe and effective vaccine for COVID-19. In this way, it has become even more apparent that a digital platform which enables secure access to sensitive health data is urgently required to advance research and ultimately, the discovery of treatments and cures for a multitude of diseases, including rare and inherited retinal diseases.

In terms of technology, it has never been easier to gather, store and share data and information worldwide. However, the challenge in developing a safe and accessible database lies in accommodating such a complex landscape of data regulation and protection laws which largely discourage cross-border collaboration.

In July 2020, the World Economic Forum published a report called “Sharing Sensitive Health Data in a Federated Data Consortium Model”, which details an eight step guide for building a federated data consortium; an effective way of allowing restricted access to sensitive health data¹. This report builds on previous work from the “Breaking Barriers to Health Data” project conducted between July 2018 and July 2020 by the World Economic Forum, which encourages the use of a federated data system model to facilitate cross-border data sharing, describing how it can be established and operated sustainably and efficiently in a way that also guarantees personal data privacy².

It is crucial to develop trust and transparency among governments, stakeholders and involved parties who have access to the data about these federated data systems. Stating its value in terms of advancing research into treatments and cures for a plethora of diseases is imperative in order to align and modify current data legislation to an international standard so as to maximise its success, universal application and sustainability.

Sharing data, particularly genomic data; DNA which can be analysed on a computer and used to identify the cause or contributing factors to disease, through federated data systems allows for researchers conducting studies and clinical trials to access a more diverse and significantly larger dataset. This allows for more accurate results, particularly for rare diseases where it is difficult to gather large samples in a single region.

Therefore, a proactive approach must be taken to highlight federated data systems as a safe, secure and valid means of sharing important information to governments and other stakeholders. This will contribute to advancing our knowledge of a multitude of diseases, and in particular, facilitate the accelerated discovery of treatments and cures for a variety of rare and inherited retinal diseases.

References:

1. World Economic Forum. Sharing Sensitive health Data in a Federated Data Consortium Model: An Eight Step Guide. Available at: http://www3.weforum.org/docs/WEF_Sharing_Sensitive_Health_Data_2020.pdf. Accessed August 2020.
2. World Economic Forum. Breaking Barriers to Health Data Project. Available at: https://www.weforum.org/projects/breaking-barriers-to-health-data-project. Accessed August 2020.