Article: Unwinding the open data debate for rare diseases

Open Data, Open Source

Unwinding the open data debate for rare diseases

Data is the new oil. The advancements in AI, data mining, big-data present enormous opportunities to build an open data ecosystem in healthcare to accelerate innovation in every spectrum of the system. Open data is one that can be freely used, reused, shared, and distributed without copyright, patent, or other methods of restriction.

However, healthcare data falls within the category of ‘personal sensitive data’ and needs a framework to ensure data privacy and data custodianship. This poses the dilemma of how healthcare data needs to be shared and how much of it needs to be shared, specifically in the context of rare diseases.

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