FAQs

The HONEUR platform is designed to connect networks of data sources across Europe, which have data on patients with haematological malignancies. Data always stays protected and network partners keep control of their data at all times. Data partner are able to use new tools to securely analyse large volumes of data on a European scale. This will facilitate the generation of new Real-World Evidence about haematological malignancies, e.g., their possible trajectories, biological markers of the cancer types and their severity, and the effectiveness of different treatments.

• In contrast to traditional trials, RWE encompasses a broader population, generating valuable patient insights that contribute to advancing clinical practice.
• It has the potential to become a catalyst for the entire healthcare ecosystem, becoming an engine for a self-learning health system that optimizes the treatment experience for individuals.
• Additionally, real-world evidence ensures that patients are partners in the effort to transform patient data into patient empowerment.

The power of HONEUR lies in enabling data analysis on multiple data sets with methodological and statistical possibilities. By analysing data from multiple partners, common research questions on overall survival, time to next treatment, or treatment sequencing can be answered. These are only a few examples - as HONEUR evolves, answers to other questions will follow.

The HONEUR portal is the core of the network. It’s a secured environment that is only accessible to HONEUR partners. It offers different functionalities to the partners. A data catalogue contains a description of various data sets of data partners and how to engage with them. The study catalogue is the central place where a study request gets initiated, and where the analysis script and eventually aggregated results will be stored (visible to study participants only). No patient-level data are stored on the HONEUR portal – only aggregated results or a research question.

The HONEUR network is based on the principle that data partners have local governance and keep control of their own data at all times. The original source data are transformed at the data partner’s site to the OMOP common data model, which always stays local.

If a data partner agrees to participate in an analysis, this would be carried out locally and the results would be posted on the central HONEUR portal. In the base case, all results are being aggregated. In the seldom-seen case that a research question can only be answered with patient-level data (and upon explicit agreement), pseudonymised data can be shared. All data are always protected by encryption.

JnJ remunerates at Fair Market Value for efforts arising from the implementation of HONEUR during the set-up phase as well as for research questions being carried out. Additionally, JnJ pays a yearly fee for performed feasibility queries.