This proposal for a European Cancer Patient Digital Centre (ECPDC) Information Portal, EU-CIP, addresses the information needs of cancer patients, survivors, relatives, and caregivers. EU-CIP aims to create a patient-centric cancer information portal that improves health literacy, empowers patients, and reduces inequalities in access to cancer care information across Europe. The EU-CIP primary goal is to improve quality of life and enhance cancer patient care by improving access to general and personalized knowledge, delivering comprehensive information on cancer prevention, early detection, diagnosis, and treatment options including risks, side effects and late effects as well as information on rehabilitation and management of recurrence and palliative care. EU-CIP will prioritise high-incidence cancers, those with poor prognosis, and paediatric cancers. A Common Library of Contents available to all Member States will be created and EU-CIP nodes will be deployed in 10 Member States. The Library of Contents will use information from evidence-based sources such as the Knowledge Centre on Cancer and the European Cancer Information Service, existing Cancer Information Portals, and European guidelines. A governance framework for scalable content creation and review processes supported by AI tooling will be established. The consortium partners, including several patient organisations, will ensure that the patients’ view is reflected in the content review and technology usability aspects. The EU-CIP Central and local nodes will be built in a modular fashion to allow integration with existing electronic health infrastructures. To align with the EU Cancer Mission goal to improve lives through prevention, EU-CIP will raise awareness about the Mission and Europe’s Beating Cancer Plan. Alignment with the Mission’s overall plans will be realized through collaboration with the EU funded projects of the related 01-01/01-02 calls.

Despite decades of devoted research, cancer remains a tremendous health threat and societal burden. Europe's Beating Cancer Plan aims to improve the lives of more than 3 million people by 2030 by improving prevention, early detection, diagnostics, therapeutics, and quality of life. The biggest single hurdle here is the highly inadequate way cancer data, both from research and healthcare, are still being dealt with. While other areas of society (e.g. e-finance, e-commerce, logistics, travel, meteorology, etc.) have fully exploited advances in data and information technology to serve organisations as well as individual consumers, so far this has failed in the health domain. Consequently, cancer data are hard to Find, Access, make Interoperable and Reuse. Evidently this is not caused by lack of suitable technology, but rather by organisational, social and cultural causes. Inherently, solving the problem requires a cultural shift from the current craftsmanship approach to cancer research and data, to a drastic collaboration model at industrial scale. CANDLE therefore aims to scale-up and improve existing (inter)national health data infrastructures, align maximally with national EHDS implementations in member states, including HDAB’s, DAAMS’s and SPE’s. CANDLE will also identify and resolve potential barriers (https://www.health-ri.nl/en/participation/obstacles-removal-trajectory ) that jeopardize effective implementation of UNCAN.eu and ECPDC digital platforms. CANDLE aims to equip data users and NCDN developers with a ‘ready-to-use' CANDLE Resource Kit in a process oriented (research journey, patient journey, data life cycle) way. This action is part of the Cancer Mission clusters of projects 'Understanding' and ‘Quality of Life’ established in 2022 and 2023. In summary, CANDLE will provide an avenue towards a successful and highly desired data transformation in European cancer research and serve as a catalyzer for the UNCAN.eu and ECPDC platforms by advancing the development of NCDNs to reach the goal of the Cancer Mission and Europe’s Beating Cancer Plan, i.e. reducing the burden of cancer.