UNCAN.eu work-packages leaders and co-leaders met on December 8th, 2022, for their Face-to-Face ExCom meeting, on the premises of ECPC in Brussels.
During the morning session, partners discussed the project’s progress, checked adherence to the timelines, and decided on the next steps to take for the project to go ahead as planned.
For the afternoon session, we were very pleased to welcome European Commission representatives to share information and views while checking that we are on the same page regarding the ‘UNCAN.eu’ project.
Barbara KERSTIENS (Head of Unit, EC), Jan-Willem VAN DE LOO (Scientific Officer in charge of Cancer Research), Annika NOWAK (Head of Sector Cancer Mission Secretariat), Catherine BERENS (Deputy Head of Unit, Kay DUGGAN-WALLS (Policy Officer), Angelo SOLIMINI (Public Health) and Ioannis VOULDIS (HaDEA, CSA 4.UNCAN.eu Project Officer) joined the face to face meeting while Joanna DRAKE (Deputy Director-General), together with Ana FRӦBE, Nevenka MAHER, Penilla GUNTHER, and Kaia Palm from the mission board participated online.
After an introduction by Joanna DRAKE reminding the importance of UNCAN.eu project and what was at stake, 4.UNCAN.eu coordinator took the stage to propose a series of statements generated by the CSA and get the reaction and comments of EC representatives. It engaged in a very open and fruitful discussion on what is at stake with this project and how to implement it. EC representatives gave very valuable feedback to the CSA team to propose a sustainable organization for UNCAN.eu.
Briefly, the CSA team is welcome to propose several implementation models for UNCAN.eu, which will most likely be an organization gathering and federating major existing programs across Europe. It will generate, in the setting of an existing EU infrastructure, a European Cancer Research Data Hub (WP3) for the collection and sharing of all types of data that could be useful for cancer research programs.
UNCAN.eu may be able to connect data that are currently being stored separately, as their integration may favour the discovery of new key insights into cancer mechanisms and treatment. The CSA’s team argued that UNCAN.eu will have to start with use cases (as defined by WP2) for two main reasons: 1) these use cases will allow defining the best standards to store existing (when available and useful) and newly generated (when needed) data; and 2) it is essential to involve EU researchers early in the process of creating UNCAN.eu database in a bottom-up process.
The CSA’s team has offered to have a scientific board in UNCAN.eu organization. This board will analyse the data gathered in the cancer research data hub and identify cancer research challenges that need to be addressed by using existing information and generating complementary data. Patients and citizens will be part of this board. Ongoing surveys organized by WP4 will provide initial information on their expectations.
Because UNCAN.eu ambition is to facilitate high-quality cancer research across Europe in a sustainable way, the CSA’s team suggests that an Equality Board could be part of UNCAN.eu organization, guaranteeing the continuous evaluation of discrepancies between MS and proposing solutions to fill gaps (WP6).
Finally, the biggest challenge of the CSA is to propose governance models for UNCAN.eu organisation (WP5). These models will integrate constraints generated by GDPR regulation, which may impose a federated organisation of most human data storage. Nevertheless, a centralized collection of cancer research data generated by using vivo/vitro models could make sense.
EC representatives put emphasis on the need to connect to MS representatives as the financial sustainability of UNCAN.eu may be achieved in a large part through MS funding, possibly complemented by EC and industrial partners.
CSA’s members very much appreciated this first exchange with EC representatives who proposed to meet on a regular basis this year in order to move toward a final blueprint in a coordinated manner. The next meeting is planned for March 2023.