On June 30th, all Dutch partners of the Health Outcome Observatory (H2O)-project came together for an interactive Oncology Acceleration session. The vision of H2O is to establish patient-centered ethically and legally sound, extensible and permanent national health outcome observatories in four countries. In this session, we evaluated which role every Dutch partner of H2O will play within the project, and how this can be properly organized for the Netherlands.
Work package leader of Oncology Lonneke van der Poll announced that they established the preliminary outcomes sets for lung cancer and advanced breast cancer, and that the sets are ready for further evaluations with international experts to reach consensus. The recruitment of participants for these Delphi rounds are planned to start at the end of August, and the outcomes sets will be complete in October 2021. These interim results are promising for the future of the H2O project.
For the next steps within the H2O project, primary breast cancer was chosen to be the use case as some stakeholders have experience with the infrastructure of the data collection for primary breast cancer. The focus will be to inventory what is needed to build a platform, and outcomes of the use cage can be an example for other diseases, mentioned by Linetta Koppert WP1 and country lead for the Netherlands.
The main conclusion during the session was that the hospitals are responsible for the organization of their source data, which means patient-data must be registered in a structured manner. IT services are then needed to collect and visualize both patient-data and aggregated data on a dashboard. By this, we create so-called observatories to combine anonymized data (from patients, doctors and studies) so that patients, researchers and private parties can gain more insight.
The session ended with concrete action points. The main goal for now is to set up a well-functioning infrastructure for the continuous collecting of a pre-defined set of data.