Written by Ewelina Rzepa on Friday 14th June 2019
This event is organised every other year by the European Organisation for Research and Treatment of Cancer (EORTC), which is an independent, non-profit cancer research organisation. EORTC’s mission is to coordinate and conduct international translational and clinical research to increase people’s survival and quality of life by testing new therapeutic strategies based on existing drugs, surgery and radiotherapy. EORTC also specialises in the development and linguistic validations of generic and cancer specific QoL measures in line with the strictest scientific, quality and reliability requirements.
It was the 5th edition of an incredibly stimulating conference that created the opportunity to learn about the latest topics in quality of life (QoL) and patient reported outcomes (PRO) research. The two-day conference brought together over 30 researchers from around the world to present and discuss the current state of the art PRO research. A variety of topics were covered including the latest methods for instrument development and QoL measurement in cancer clinical trials, methods for designing robust patient-centric studies and key factors contributing to a coherent understanding of clinical outcomes. Moreover, multiple sessions focused on discussing emerging technologies and the rapidly growing field of electronic questionnaire administration. This is particularly important for the PCO team at OPEN VIE as we observe an increasing need for a shift from collecting patient centric data in a standard paper way to collecting the same, robust data in an electronic format. Hence, a high proportion of PCO studies that we design for our clients incorporate robust, scientific standards with advances in modern technology to embrace the digital revolution in healthcare.
Another topic for discussion explored the current regulatory challenges in using and interpreting PROs in clinical trials and real-world evidence (RWE) studies. The US, European and UK perspectives were presented emphasising the value of patient centric data in drug development and post launch monitoring. However, a call for further policy developments and standardisation of practices of PRO data collection, analysis and interpretation was made. This session was of great interest to our PCO team, as it is our standard practice to work very closely with our clients to advise them on the current PRO requirements for regulatory and HTA/reimbursement submissions.
This event also ensured that true patient perspectives and experiences on involvement in clinical trials were presented. Many patients and patient advocates shared their incredible and personal stories and provided their unique vision on QoL in cancer. Great work has already been done to ensure that the patient voice is heard, understood and at the centre of clinical trial development. We are delighted to see that patient involvement in clinical research is becoming a priority and we are very proud of the fact that it has been our standard practice for years to include patients in our initial study designs. By employing this approach we can ensure success of our studies as it offers huge benefits such as identification of appropriate research questions and the outcomes to assess leading to selection of variables and PRO measures relevant to patients, increase in patients’ recruitment and retention and more relevant and interpretable results.
If you’d like to find out more about our PCO capabilities within OPEN VIE, please contact:
Catherine Bottomley – Associate Director at OPEN VIE
+44 (0)1628 481 112