Patient representatives, Erik Briers and Ken Mastris, reflect on the relevance of PIONEER for prostate cancer patients.
Erik Briers, prostate cancer patient, Belgium
The PIONEER project and its application of real-world data to answer unknown questions relating to prostate cancer is very important for patients. Clinical trials are done with highly selected patients, thus many subpopulations (e.g. patients with kidney problems) are excluded. Once new medicines received market authorisation all patients can be treated with them, but really we have no data on their benefit to patients in the untested subpopulations. Big Data and real-world data can deliver the answer to this question: “Do patients in subgroups benefit?”. The answer to this question has the potential to protect patients from unwanted side effects from medicines that may in fact have no benefit to them. It also enables saving across healthcare systems; ultimately, making our healthcare systems more sustainable. This is just one example of many, so yes, PIONEER and the BD4BO programme is of high importance to patients.
Ken Mastris, prostate cancer patient, United Kingdom
It’s time for more research on prostate cancer. Overall it effects nearly as many people as breast cancer, but up to now has received comparatively minimum research funding, and progress made in this field has been limited when compared to other major cancer types. Insufficient knowledge of patient characteristics and risk factors at time of diagnosis means that deciding which patients will have the best outcome with specific treatments is challenging at best. Big Data if properly combined and analysed can bridge this knowledge gap. Therefore, the goals of the BD4BO programme and PIONEER will help future patients. I hope it brings early stratification of patients at diagnosis so patients can make the right choice of treatment for them guided by their urologist. Fixing the gaps in the patient journey will benefit all.