Gözde Susuzlu Briggs
European Patients Forum
Introduce yourself and your the European Patients Forum?
I’m Gözde Susuzlu, Project Coordinator at the European Patients Forum (EPF), based in Brussels, Belgium. I contribute to EHDEN and other digital health and health data related projects, such as DigitalHealthEurope and the Data Saves Lives initiative. The diversity of the work that I do ensures that no day is like any other, and I’m always focused on helping the community get stronger, which makes you feel good when the day is done!
EPF is an umbrella organisation that works with patient groups on public health and health advocacy across Europe. Our Vision is that all patients with chronic conditions in Europe have access to high-quality, patient-centred health and related care. Our Mission is to be the collective influential patient voice in European health and related policies, and a driving force to advance patient empowerment and equitable patient access to care in Europe.
What is your role in EHDEN and what do you personally hope to get out of this role?
EPF contributes to EHDEN in a number of workstreams, which include identifying high-priority use cases as proof-of-concept of study execution; exploring guidelines and regulations for predictive model development; and evaluation, adoption and developing educational and training material for the analytical tools arising out of the EHDEN project. We participate strongly in the outreach and sustainability streams of EHDEN, especially strategic engagement and buy-in of external parties, in light of potentially controversial topics of high relevance for the audience. EPF helps to coordinate the production of educational and training material in synergy with other work packages, and ensures transparency and openness of the project from a patient perspective. We also play an important role analysing and remediating any ethical issues arising during the project.
What would you consider success at the end of EHDEN?
For EPF, an EHDEN success story is one that ultimately has patient communities at heart. Successfully creating a go-to federated network of data sources isn’t just about making it easier to collaborate across studies or countries – it’s about better health outcomes for those who need it most, faster access to medicines, and an overall better quality of life.