Urology and big data: “As a society we need to build capacity”
While the Annual EAU Congress prides itself on presenting urologists with the latest scientific insights, live surgery and hands-on training courses, there are other, less tangible aspects that have a huge influence on urological care. Several of these developments were brought together in the Special Session “PIONEER real-world evidence, big data and prostate cancer” on the third day of EAU22 in Amsterdam.
During the session, delegates heard updates from data experts, people with a close involvement in the politics that drive decisions, research urologists and patient representatives. Together, they painted a complex picture of technical possibilities, political initiatives by the European Commission and practical steps taken by urologists in the use of big data for prostate cancer research.
EAU Adjunct Secretary for Education, Prof. James N’Dow (Aberdeen, GB) outlined the importance for the EAU and urologists in general to engage with these initiatives:
“We’re a professional medical society, with a commitment to data and answering questions that randomised controlled trials cannot answer for us. We need to improve the lives of our continent’s citizens.”
“As a society we need to build capacity: we need to get data analysts and epidemiologists to the same table. Most importantly, we must ensure that patients are with us right from the start. This is not some academic exercise but it’s the lives of people. We must address this, and we need to provide answers.”
These comments helped focus the audience on the ultimate mission of urologists and by extension the EAU, especially as they followed some very complex diagrams of big data management, EU research budgets and the “study-a-thons” that try to string together available prostate cancer data in order to generate clinically applicable data.
The human measure
It was Dr. Erik Brier’s (Hasselt, BE) talk at the session that was a stark reminder of what was at stake: the prostate cancer patient. As a prostate cancer survivor himself, and currently Vice-Chair of the patient advocacy group Europa UOMO, Dr. Brier pointed out that the patient’s concerns might not be the same as the researchers’, or might even be at odds with it.
“Patients look at data in a different way,” he explained. “We have other priorities like the ultimate ownership of our data, and the permission we give. We choose to share this information in order to benefit ourselves and future patients. It doesn’t belong to, for instance, the app makers, whose products will soon be regulated like the medical devices that they have become.”
On the other hand, Dr. Brier was very positive about the involvement of patients as a core stakeholder of the PIONEER Network: “We are becoming more and more involved in projects like these. It’s a very good evolution that researchers and other medical professionals are taking on board patient views and we need more of that.”
- The EAU is also increasingly involving patient perspectives in its publications and events. EAU22 features a full-day programme on Monday specifically designed for urology patients.