PIONEER operates with two data access models – a central and federated model. In the central model, a copy of the data is transferred to PIONEER, converted and stored in a central data warehouse for research. In the federated model, data owners standardize their own data sets and set up analytical tools within their own data environment supplying PIONEER with aggregated results from requested analytic tasks. In this data access model, the data does not leave its original site. Data from a variety of sources are effectively temporarily “linked” in order to address specific remote queries. PIONEER is thus bringing the analysis to the data. Within PIONEER, CASUS will be responsible for the coordination and management of both data utilization models.

Within PIONEER the data has been redacted to ensure sufficient anonymity such that the identification of the person to whom the data relates is virtually impossible. The data within PIONEER’s Big Data Platform is not classified as personal data and as such the use of the data complies with all applicable data protection laws at the EU level. These data fall outside the scope of the EU’s General Data Protection Regulation while maintaining their clinical relevance.


Open questions in prostate cancer research
In general, PIONEER aims to both identify and close knowledge gaps in prostate cancer research. Among the most pressing open questions determined so far are: What are the relevant tumor-specific and patient-specific variables that affect prognosis of prostate cancer patients suitable for active surveillance? What is the natural history of prostate cancer patients undergoing conservative management (i.e., watchful waiting) and what is the impact of comorbidities and life expectancy on long-term outcomes? By scrutinizing data from diverse populations of prostate cancer patients across different stages of the disease (and from different European countries) PIONEER is expected to provide evidence-based answers to these questions to facilitate improved shared-decision making between physicians and patients. The final goal is to not only improve prostate-cancer related outcomes but also to increase healthcare system efficiency and the overall quality of health and social care.

At present the PIONEER platform, both central and federated, consists of a network of 29 data sets from consortium partners, industry and associated data partners. Of these, eleven datasets have been mapped to the European Common Data Model (CDM) of the Observational Medical Outcomes Partnership (OMOP), with mapping ongoing or about to start for an additional eight datasets. Once complete, the PIONEER Big Data platform will cover 1.8 million prostate cancer patients.

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