Intelligent ecosystem to improve
the governance, the sharing,

and the re-use of health data for rare cancers


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IDEA4RC partners wish to engage in an open and ongoing dialogue with a wide and diverse group of stakeholders. These stakeholders may benefit from the work we are undertaking to conceive and deploy the IDEA4RC data ecosystem. Moreover, they are welcome to provide significant insights during the development of the ecosystem.

Therefore, future data providers, data users, healthcare actors, health-related businesses, patient advocacy groups and anyone interested in the project, are invited to join our IDEA4RC Community of Interest.

By joining the Community, you will have an opportunity to make your voice heard and your values and expectations considered during the development of the IDEA4RC Data Ecosystem.

You will be engaged in online forums, surveys, webinars, focus groups, and other initiatives we will organize, according to your profile and interests.

The most important questions that IDEA4RC partners intend to address, discuss and answer with you within the Community of Interest include:

Who should have access to a Health Data Ecosystem for rare cancers?
Should users be asked for a financial or other types of support to access the data?
How can we ensure that this data ecosystem is both useful and compliant with current and future regulations, such as the GDPR and the EHDS?
Who should evaluate and approve data access requests to conduct scientific research, and how?
What technical components are necessary to implement this vision, and how could they be deployed to create trustworthy and secure processing environments for health data?

Join the IDEA4RC Community of Interest