Session #7: Data Hubs for Health Solutions: Protecting the Value of your Data

Maya Medeiros & Alexis Kerr, Norton Rose Fulbright

Worldwide “health” data hubs collect different types of data and provide software tools to extract insights from data. A data hub might be available “as-is” to “use at your own risk,” so that each participant is ultimately responsible for legal compliance. Collection and use of sensitive data engages regulatory frameworks that protect personal information, which vary from country to country. The global nature of these data hubs makes regulatory compliance for participants particularly complex. Data hubs storing large amounts of sensitive data are threatened by security attacks. Data hubs often involve many different stakeholders and owners of IP rights. How can an organization protect its data and tools as IP assets with a view to maximizing commercial value? Different licensing models can be used for a data hub to define the scope of permitted use of data and tools by others. An “open” licensing model is still subject to contractual restrictions. Participants of data hubs should manage their own compliance and not rely on the organization centrally managing the data hub.