Using big data to boost prostate cancer diagnosis and treatment
Prostate cancer is the second leading cause of cancer among men. Around one in eight men will be diagnosed with this pernicious form of cancer during their lifetime. An ageing European population threatens to increase the associated socio-economic burden in the coming years. Despite much research into prostate cancer, there remain several key knowledge gaps regarding screening, diagnosis and treatment. This lack of knowledge can hamper effective decision-making throughout the clinical process, and compromise the health and quality of life of patients. The EU and industry-funded PIONEER project sought to rectify this, by combining European scientific expertise and big data to identify critical evidence gaps and close them up. The project gathered real-world data from clinical studies, public registries and electronic health records, and created an anonymised, harmonised platform to boost research into prostate cancer and improve patient outcomes. The PIONEER consortium comprised 36 private and public partners across Europe. The team was able to establish a high-quality data platform hosted in Germany with millions of prostate cancer patients’ anonymised data available for research. “PIONEER has entered the sustainability phase and we are pleased that due to the success of the project, the consortium is able to continue its work beyond the grant period,” explains James N’Dow, adjunct secretary general for education at the European Association of Urology (EAU) and project coordinator.
Patients as participants and partners
The project prioritised 56 unanswered research questions through a multi-stakeholder, unbiased prioritisation exercise, including a significant number of patients from different European countries as well as other stakeholders. From the start, the PIONEER project ensured that patients participated actively as key partners, including them in the design of the project, and the research itself. “Patients gave us first-hand views on which outcomes they feel are most important and hence prioritised when answering specific research questions,” adds N’Dow. This collaborative strategy gave data owners the trust and confidence needed to share their data, improving the overall outcomes of the project for all involved. At the beginning of the project, the expectation was that 10-15 % of data set owners would share data centrally with the rest, using a federated model of sharing. This means data are kept behind their institution’s firewall, and only aggregated results are shared after the institutions run algorithms provided by PIONEER. So far, 40 % have agreed to share data centrally, showing a high level of trust in the project.
A catalyst for digital transformation
The project platform is now available for researchers to answer important research questions related to all aspects of prostate cancer. One of the most significant achievements is that the project has become a catalyst for the comprehensive digital transformation of an international, professional medical society, the EAU. The project triggered the establishment of the EAU UroEvidenceHub. The hub will host a wide range of data sets and feature prospective registries capturing patient-reported outcomes and quality of life data. This will start with prostate cancer but will extend to other urological diseases over time. “This hub will also allow the development of cutting-edge clinical decision support tools and AI models to assist diagnosis and treatment decisions,” says N’Dow.
Keywords
PIONEER, prostate cancer, digital, transformation, patients, big data, scientific expertise
