PIONEER is a European network of excellence for big data in prostate cancer, consisting of private and public stakeholders from 9 countries across Europe. Major stakeholders including healthcare professionals and patients were consulted to propose the most critical questions in the field of prostate cancer to be answered using big data. Through this process, key questions were identified. The PIONEER consortium conducted a two-round modified Delphi survey aiming to build consensus between the two stakeholder groups: healthcare professionals and prostate cancer patients. Respondents were asked to consider what impact answering the proposed questions would have on better diagnosis and treatment outcomes for prostate cancer patients, while scoring these questions on a scale of 1 (not important) to 9 (critically important). In total, 73 healthcare professionals and 57 patients participated in round one. Twelve additional questions were proposed during this first round. For the second round 169 patients (including 53 English; 19 French; 31 German; 53 Italian; 13 Spanish) participated. The results were analysed by calculating the percentage of respondents scoring each question as not important, important, or critically important. The mean of the percentages across the two stake-holder groups scoring each of the 56 questions as “critically important” was calculated and used to rank the questions in terms of those scoring highest in the “critically important” category. Three questions (Q1, Q2 and Q4) focused on prognostic factors and two (Q4 and Q5) on the role of medical interventions on patient outcomes. The disease stages that were covered are also varied, including localized (Q1, Q2, Q3), recurrent (Q4) and metastatic (Q5) disease. Hence prioritisation does not seem to be biased towards the opinion of a subgroup of HCPs (urologists versus medical oncologists for example). Although the prioritisation of the first 5 questions was overall similar between HCPs and patients, for two questions (Q3 and 4) there was a +/- 10% difference in the percentage of respondents categorizing the question as critically important. For Q3 this was 91.8% by HCPs versus 82.3% by patients and for Q4 79.6% versus 92.5%. Identification of critical questions will help the PIONEER consortium to answer those questions that are critical to various stakeholders.
PIONEER is funded through the IMI2 Joint Undertaking and is listed under grant agreement No. 777492. This joint under- taking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.