At the beginning of this year, we took the time once more to reflect on our major learnings and most inspiring experiences from a selection of meetings and conferences in 2022 which will serve as an inspiration moving forward on the right path in 2023. The excitement was high when patients, their families, professionals, and colleagues finally gathered again for the first time after 2 years of a break!
Most impressive and telling for us was a EU-US speaker-backed panel about the challenges for patient advocacy in the new field of gene and cell therapies. Many new questions, concerns, hopes, and myths related to the “one-and-done” treatments are yet to be addressed and a lot of answers are still pending and may remain for many years. For all stakeholders involved a lot of joint learning and thoughtful communication and collaboration will be needed. It’s certainly a fascinating time for innovative treatments with fantastic prospects for many patients, but there are also very complex discussions ahead of us with certainly some heavy disappointments to come too.
Patient Engagement in 2030:
admedicum organized, together with HollandBIO, a great symposium in Utrecht, the Netherlands, where speakers from patient organizations, healthcare, regulatory, and industry shared forward-thinking perspectives towards solutions, improvements, and opportunities for patient engagement in 2030.
The consensus from the event is that patient engagement will continue to evolve towards patient AND public involvement in research with an increased focus on person-centered, value-based healthcare. As Ana Mingorance shared with the participants during her talk, “By 2030…Patients are at the center of drug development, supported by the professionalization of the patient community, an ecosystem of expert organizations, and a social contract that requires biopharma companies to help build disease knowledge together with the entire community.”
Roger Legtenberg attended the SCOPE Europe Fall edition in Barcelona, which brought together an interesting mix of attendees from biopharma, vendors, and patient engagement experts discussing decentralization and digitalization of clinical trials. Although patient engagement was considered to be crucially important to get decentralization and digitalization of clinical trials to the next level, it became apparent that lots of challenges need to be overcome to implement this meaningfully & successfully.
Clinical trials Europe:
Roger Legtenberg also attended Clinical Trials Europe in Amsterdam, in which digitalization of clinical trials and the future of healthcare were hot topics being discussed. During the two-day event, the importance of designing, setting up, and executing clinical trials together with patients was widely acknowledged as one of the key components for successful clinical development. A few key take-home messages: Ken Getz from Tufts CSDO gave a great overview of where we are as an industry currently when it comes to new innovations in clinical trials and summarized the overall consensus of the event: It is apparent that we need to reduce unnecessary complexity and wasted funding and resources, clinical trial quality and utility should be elevated, efficiency increased & improved access, diversity and engagement are required as well. Also, Lucien Engelen clearly stated in his inspiring keynote lecture that big changes are about to happen in healthcare in the years to come: the shift IS happening in healthcare, and we should all have an open mind towards new innovations if these are meaningful for patients.
Our colleague Vera Vennedey attended the neurowoche2022 in Berlin and was impressed by seeing the advances in SMA therapies in infants. Thanks to SMA screening, early diagnosis and treatment, great improvements in quality of life and life expectancy can be reached. See also: https://www.sma-screening-alliance.org
At the COMPARE-EU final advocacy event, Marina Hoffmann got to know a platform that provides an overview of the evidence on self-management interventions for four chronic diseases, which are type 2 diabetes, obesity, COPD, and heart failure. This platform should support patients and HCPs in their decision-making on self-management interventions and tools to use. Read more: https://platform.self-management.eu/cost-effectiveness
In October 2022 Philipp von Gallwitz graduated from the terrific EUPATI Patient Expert Program (EUPATI Fellow Program). The impressive fellow group is growing every year and more and more patient experts emerge from it. Any materials from EUPATI are highly recommended for patients and industry managers interested in collaborating with each other!
However, it also became clear that there is still a leap needed to help most EUPATI graduates move up from a general understanding of clinical development and registration of drugs to effectively working with industry and other stakeholders on bringing in the patient view into discussions related to e.g. patient preference research, clinical trial design & recruitment or co-creation of patient-relevant support programs. We will continue to work a lot with EUPATI team partners in our projects and look forward to collaborating with EUPATI on further expanding this fabulous fellowship program.
Let’s continue in 2023 with moving the needle to achieve meaningful and relevant patient engagement! We are looking forward to meeting, exchanging, and catching up with you in 2023, for instance in March at the Pronovea Patient Recruitment and Retention in Clinical Trials conference, the upcoming World Orphan Drug Conferences in May (USA) & October (Europe) and the Patient as Partners conferences in March (USA) & June (Europe).