It has been some forty years since Rose Kushner, a US breast cancer survivor, first openly discussed the involvement of patients in clinical trials and much progress has been achieved.
The discussants around patient involvement in the design process focused on the increasing mis-match between the complexity of current protocols and the ability of patients to ‘add value’ when such a high level of knowledge is required. Whilst the importance of patient-driven endpoints was acknowledged it was also clear that this was often at odd’s with regulatory-driven requirements. Roger Wilson with his extensive experience with the NCRI was clear that what was needed was better educated patient advocates sitting on clinical trial design groups, particularly, and this was broadly agreed by the audience a lot of participation was often felt to be lip service.
The panel then moved onto the optimal involvement of patients once clinical trials had started. Dr. Denis Lacombe shared his experience with the EORTC pointing out that patient engagement was essential particularly in the era of biological studies. The panel and audience also discussed the impact of social media on communication between patients during clinical trials. Prof. Garth Cruickshank pointed out that many patients now used social media to communicate with each other; the potential to circumventing trial blinding was becoming a real and serious issue.
Finally Dr. Ingrid Klingmann and Andras Fehervary discussed the perennially thorny issue of dissemination. Wrapped into this discussion was the issue of registration and publication of clinical trials. All concerned agreed that the situation was a long way from being even satisfactory – ClinicalTrials.gov and other databases were impossible to interrogate and there was a real need for a patient-friendly meta-search engine. Post trial dissemination was also felt to be really quite poor with few examples of patients being kept informed about the results and impact of their particular clinical trial. All in all many learning points and a strong message that this must be a key policy area for the European cancer organisations, both professional and patient.
Prof. Richard Sullivan, Moderator was joined by Roger Wilson CBE, Prof. Garth Cruickshank, Dr. Ingrid Klingmann, Andras Fehervary and Dr. Denis Lacombe