Support dialogue towards the development of national cancer data nodes

ExpectedOutcome:

Data is an essential resource to improve our understanding of cancer, advance prevention and early detection strategies, facilitate the delivery of personalised care, and better address the quality of life of cancer patients and survivors.

The Cancer Mission supports the creation of the European Initiative to Understand Cancer (UNCAN.eu, a federated European cancer research data infrastructure) and the European Cancer Patient Digital Centre (ECPDC, a European network of national digital infrastructures for cancer patients)^[1].

The proposal under this topic is expected to contribute to all of the following outcomes:

• Advance the process of establishing National cancer data nodes^[2], by the scaling-up or improvement of existing national health data infrastructures and by fostering their links to the European Health Data Space infrastructures for primary and secondary data uses.
• Potential barriers that may prevent the effective implementation of UNCAN.eu and ECPDC digital platforms are identified and a way forward to address them proposed.

Scope:

The proposal should address all of the following:

• Foster the development of national cancer data nodes through policy dialogues at national level with relevant actors in the research and innovation community, digital health and public health policy.
• Identify and build synergies between European infrastructures related to health data access and health data sharing for primary and secondary data uses (e.g. MyData@eu, HealthData@eu, ELIXIR, BBMRI, and others), and other initiatives relevant for the UNCAN.eu and ECPDC platforms.
• Identify challenges and barriers to the effective future implementation of the UNCAN.eu and the ECPDC platforms at national and European levels and propose operational solutions to overcome them.
• Identify population subgroups with poor digital skills and geographical areas with limited digital resources that might prevent the use of those platforms and propose solutions to reduce the digital divide.

The involvement of cancer research centres, digital infrastructures, public health bodies, policy makers and cancer patient organisations will ensure that the UNCAN.eu and ECPDC platforms will deliver effective outcomes for researchers, clinicians, healthcare providers, cancer patients, survivors, and caregivers.

Due consideration should be given to EU-funded initiatives, infrastructures and projects such as: EOSC4cancer^[3] canSERV^[4], the European Cancer Information System^[5], and the successful proposals resulting from the topics; HORIZON-MISS-2024-CANCER-01-01, HORIZON-MISS-2024-CANCER-01-06.

This topic requires the effective contribution of Social Sciences and Humanities (SSH) disciplines and the involvement of SSH experts, institutions as well as the inclusion of relevant SSH expertise, to produce meaningful and significant effects enhancing the societal impact of the related research activities.

The Commission will facilitate coordination. Therefore, successful proposals should include a budget for networking, attendance at meetings, and potential joint activities without the prerequisite to give details of these at this stage. Examples are: organising joint workshops, establishing best practices, joint communication or citizen engagement activities with projects funded under other clusters and pillars of Horizon Europe, or other EU programmes, as appropriate. Successful proposals will be asked to join the 'Understanding' and ‘Quality of Life’ clusters for the Mission on Cancer established in 2022 and 2023. The details of joint activities will be defined during the grant agreement preparation phase and during the life of the project.

[1]https://research-and-innovation.ec.europa.eu/system/files/2021-09/cancer_implementation_plan_for_publication_final_v2.pdf

[2]Cancer data nodes are built on European and national computing infrastructures that link different cancer data holders across European countries. Cancer data nodes can encompass medical images, digital pathology, clinical data, genomics and other omics data, cancer models, environmental and other relevant data for cancer research.

[3]https://eosc4cancer.eu/

[4]https://www.canserv.eu/

[5]https://ecis.jrc.ec.europa.eu/info/cancer_registries.html