Governance & Ethics

Bigpicture combines clear project governance with legal, ethical and data protection frameworks for the responsible use of pathology data. These structures define how Bigpicture is managed and how data can be contributed, accessed and used.

How Bigpicture is governed

Bigpicture is governed as a European public-private research initiative. The project is jointly led by Jeroen van der Laak and Katrien Grünberg of Radboud University Medical Center, Julie Boisclair of Novartis and Anna-Lena Frisk of Johnson & Johnson Innovative Medicine. Its governance structure combines consortium-level decision-making with specialist advice and coordination:

General Assembly

The main decision-making body representing the Bigpicture partners.

Managing Board

Responsible for overseeing the management, coordination and progress of the project.

Multi-stakeholder Advisory Board

Provides external perspectives from relevant stakeholder groups.

Ethics Advisory Board

Provides independent expertise and oversight on ethical and legal matters.

Node Coordination Board

Coordinates the network involved in pathology data contributions.

A framework for responsible data use

Bigpicture's legal, ethical and data governance framework defines how pathology data can be contributed, accessed and used responsibly. It covers data protection, privacy, security, access conditions and the responsibilities of contributors and users.

Clear rules for data use

The Bigpicture Data Sharing Agreement (DSA) defines the legal framework and responsibilities for sharing and using data. Individual datasets can also have their own Terms of Use, set by the Data Contributor.

Privacy and data protection

Requirements depend on the data and its intended use and can include anonymization or pseudonymization, appropriate legal bases for data use, Data Protection Impact Assessments (DPIAs), confidentiality and requirements for international data transfers. Technical safeguards, authentication and authorization provide additional protection.

Controlled access

Bigpicture is not an open-data repository. Researchers can discover available datasets, but access to the underlying data is controlled. Requests are assessed against the conditions of the individual dataset. Depending on the dataset, a Data Access Committee may oversee access on behalf of the Data Contributor.

Responsibilities continue after access is granted

Researchers must use Bigpicture data for the approved purpose and comply with the conditions set by the Data Contributor. These can include requirements around confidentiality, security, data transfer and deletion. The Bigpicture Policy for Data Users provides further information on the responsibilities that apply when accessing and using data.

Read the Policy for Data Users