BLOG – Federated data networks and health technology assessment: Insights from an EHDEN study-a-thon in oncology

In January, the National Institute for health and Care Excellence (NICE), University of Oxford and Fundació Institut Universitari per a la Recerca a l'Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol) collaboratively held a study-a-thon in Barcelona. This event brought together Data Partners and oncology experts to utilise real-world data (RWD) for advancements in oncology research, with a particular emphasis on cancer survival and extrapolation for health technology assessment (HTA).


Figure 1: Study-a-thon attendees including the project team and Data Partner representatives at IDIAPJGol in Barcelona


The study-a-thon was structured around key objectives, namely:

  • the development of a dashboard that enables users to select a database from a dropdown menu and explore survival extrapolations for eight different cancers, with options for age and sex stratifications,
  • the description of overall survival across multiple cancers and data sources,
  • and the comparison of long-term versus predicted survival for these cancers.

Even with the unexpected curveball of a nurses' strike on our second day (to which we extend our solidarity!), the study-a-thon didn't skip a beat. After three days filled with engaging, multidisciplinary discussions, all thirteen Data Partners successfully ran the study. This effort culminated in two conference abstracts and two manuscripts in development. Additionally, a fully developed oncology dashboard was created for HTA, enhancing the practicality of our findings.

The collaborative spirit and dedication of all participants were crucial to the study-a-thon's success. These productive and inspiring few days highlight the critical role of continued collaboration among Data Partners to improve our understanding of cancer survival across Europe. The dissemination of our findings will make a substantial contribution to the field of oncology research, leading the way for more informed healthcare decisions based on real-world evidence. Looking ahead, further developments in our analyses will enable tools like the dashboard to become utilised in HTA.



Figure 2: Cancer survival dashboard developed for this study-a-thon. On the left-hand side there are dropdown menus that allow users to select which dataset they are using, as well as which cancer they are reviewing. The plot shows the observed Kaplan-Meier data and extrapolations fit to it.



Dr Ravinder Claire 

Scientific Adviser – Science Policy and Research Programme

National Institute for Health and Care Excellence

United Kingdom