The ERS CRC SHARP establishes a federated analysis platform

Love what data can do for collaborative innovation

Its been a long journey, but that is typical of complex collaborative innovation projects.

The ambition of the ERS SHARP CRC is to bring together real-world registries for severe asthma. A simple solution would be just to bring all the registry datasets into one central dataset. However, with privacy concerns transferring data outside of a country or even outside of the hospital environment where it is stored is difficult.

So, the solution was to create a federated analysis platform. In other words, the data does not leave the local site and the analysis is performed locally. This is similar to what the FDA does with their Sentinel program and it is the core basis of the approach for the OHDSI consortium and the EHDEN project. It sounds simple but there are challenges in getting everyone to understand that it is not about transferring personal data, and the statistics that have to be performed are not analogous to those one uses for a typical study.

What is remarkable about SHARP is that it is a collection of 28 registries across Europe. Most federated approaches are about a combined analysis of a few large datasets. The broader network approach of SHARP has its own challenges. Just getting all the different sites and their different stakeholder to understand the concept of a federated analysis is a major undertaking. The advantage is that the process of understanding the differences between registries and transforming their datasets becomes a driver of the harmonization of clinical management practices across the network.

The SHARP CRC has reached a milestone. The first federated analysis using the infrastructure that was established across the SHARP sites is underway. Reporting of the results will have to wait until the analysis is finished. However, what can be said is that the preliminary look at the analyses shows that the federated analysis platform does work. This opens up a whole host of possibilities for new studies that put real-world data to work for improving the care of individuals suffering from severe asthma.

Through our work guiding the SHARP CRC in developing and implementing their strategy, we have gained a deeper appreciation of the value of real-world data and how important it is to have a vision-driven team of leaders that are dedicated to patient-centred research (hint- the ‘P’ in the SHARP acronym stands for patient-centred).

If you believe as we do that data is the glue that binds collaborative innovation efforts and want to do more with your collaborations and data get in touch.