The 3rd International Annual Congress on Clinical Trials was held in Vienna, Austria on 4-5 April 2019. The event brought together contract research organisations, pharmaceutical companies, patients, and trial recruitment agencies to discuss the latest trends and developments in the field of initiating, conducting and managing clinical trials in Europe, with a particular emphasis on Central and Eastern Europe.
Some countries of this region consider clinical trials a strategic business area, and so it is of essence for the stakeholders to understand the landscape.
This was the first year that the congress relied on a strong presence and input from patients as well. Three representatives of EUPATI were invited to highlight various aspects of patient involvement in biomedical research and clinical trials, and to interact with the representatives of other stakeholders so that an insight into the unique patient perspective is granted.
EUPATI Alumna Violeta Astratinei from MPNE is working intensively in the field of melanoma, with considerable outlook to and involvement in other oncological areas, too. Her presentation relied on real life experiences with treatment and health policy, and also clinical trials in Romania and beyond. But her personal story then quickly became an eye-opener on the shortcomings and challenges of participation in randomised clinical trials, and even touched on some key philosophical questions like the role of altruistic motivation and selflessness of participants. Altruism is too often and inadequately claimed as a a valid motivational factor for participants, however, Violeta warned us that the main motivation for people to join clinical trials is, after all, the wish to survive and to live a better life. She has closed with an invitation for those present at IACCT (companies, clinical trials designers, researchers) to better understand the communities they address and explore the new models in clinical research design in order to turn clinical trials in the best survival opportunities for cancer patients.
EUPATI Alumna and content coordinator Joan Jordan from Ireland is a well-known and acknowledged representative of the multiple sclerosis (MS) community. She held two presentations at IACCT2019: the first was called “What Patients Tell Each Other and Why It Matters”. It was about the adoption and uses of social media by patients. Joan spoke about the contents, challenges, importance and mastery of the conversations that patients and their communities have – on social media and elsewhere. Joan emphasised that even though these conversations are usually informal and unstructured, there is a lot to learn from them as they reflect the real needs and issues of the patient communities. Patient Reported Outcomes can be derived from this data to identify representative needs important to patients and thus increase their quality of life. Also, patient conversations can be used to facilitate and improve participant recruitment and retention in trials.
In her second presentation. Joan reported on her involvement in two research papers on unanswered questions regarding recruitment and retention in clinical trials. The now published PRIORITY I and II studies identified the top 10 research questions on both topics. The studies were a priority setting partnership (PSP) based on the methods of the James Lind Alliance (JLA) bringing patients, carers and healthcare professionals together to identify common unanswered questions. The aim of this is to help ensure that those who fund health research are aware of what future research will really matter in everyday use. Joan outlined the steps involved and her involvement in the studies. She also revealed the top 10 unanswered questions for research in clinical trial recruitment and retention. Joan was involved right from the start in both projects and was treated as an equal partner throughout. She also called the attention to a few pain points that may hinder participant retention from the patient’s perspective, having taken part in a clinical trial herself.
EUPATI communications officer Tamás Bereczky held a presentation on the theoretical background and frames of patient involvement in medicines research and development, and clinical trials. His talk discussed the schematic structure of involvement across the development spectrum, and also reassured participants that patient organisations have undergone a tremendous development process over the last 10 years that has transformed them into truly equal partners in R+D processes.
Thus, EUPATI and the patient perspective took up the entire morning session of the first day of the conference, which was an unusually enriching and empowering experience. The event also proved that the science and frameworks of clinical trials does not stop evolving, and so EUPATI will also have to keep up with this evolution through new content elements and learning materials discussing emerging paradigms like virtual clinical trials, home-based trials and adaptive designs.