Data sharing via connected IT systems
Funding from the European Commission in the form of the I4PCM EIT Health project is already supporting the construction of a data sharing platform. Patient advocates as well as ethical, regulatory and legal experts will be an integral part of the process to address patient and data privacy issues.
By pooling data across all centers to include genomic, imaging, clinical, and treatment outcome information on patients, this will allow Cancer Core Europe’s researchers to develop deeper understanding and insights than individuals in each center could obtain on their own. This working group intends to first focus on specific cancer types where pooling data has the greatest potential to make an impact.
Several harmonization and standardization needs must be fulfilled in order to share data in the most effective way. Common data standards will be set to ensure data interoperability. Bioinformatics pipelines for genomic data (eventually including expression, epigenetic, and even proteomic data) will also be harmonized to ensure data equivalency across centers. Deciding upon a mandatory metadata directory will ensure data is appropriately annotated and therefore as useful as possible.
Including data such as a tumor’s molecular profile or entire genome sequence, while linking to patients’ clinical data will allow outcomes research to be carried out. Outcomes research allows researchers to compare treatments, finding those which best benefit patients and analyze the cost/benefit ratio—to list just a few potential results.
Implement harmonized consent form to enable data sharing across Cancer Core Europe
Determine what essential metadata tags should be required. Metadata tags describe where data comes from as well as the security and privacy protections associated with the data. Metadata tags are protected and cannot be separated from the data they’re associated with.
Begin sharing data for a use case or pilot project to answer a common research question. Sharing will not be done merely for the sake of sharing, but will be done for research purposes.