During the EMSP Annual Conference 2019 in Vilnius, we organised a professional workshop on Clinical Research facilitated by Marleen Verbeeck, coach of the European Centre for Clinical Research Training (ECCRT). Mrs. Verbeeck presented the requirements of clinical research focusing on five aspects, including ethical principles, available information, informed consent, patient centricity and digital health in the context of clinical trials.
Through an interactive workshop, the participants learned about the European clinical trials database and all the credible resources where people with MS can find more information about previous, ongoing and upcoming clinical trials. At the end of the workshop and after several fruitful interactive group activities, we were reminded of the importance of future learning, rapid feedback loops between user and researchers, as well as how they can contribute to data driven innovation.
Digitalisation can help make information related to clinical research more user-friendly. Real world evidence can help people avoiding hospital time, meaning that virtual visits can ultimately empower people affected by multiple sclerosis to drive innovation. Information abundantly present on the Internet can be complicated, and the overload of information can be scary.
People affected by MS were reminded to always discuss all their questions with their healthcare professionals first, and to equip themselves before making a decision. The participants of the workshop reported that the content broadened their knowledge in the field of clinical research and helped them to make more informed decisions in the future.