Patient-controlled health data networks in Europe show a high level of heterogeneity with regard to the involvement of EU Member States, as well as the types and interoperability of collected data, organisation and governance of data storage, its access and security, and the possibility to reuse data for research purposes.
Proposals should address the existing challenges and develop a roadmap towards the creation of the ECPDC as a virtual, federated network of national infrastructures of patient-controlled health data (‘national or regional nodes’), taking into account synergies with the future "UNCAN.eu" platform, integrated within a larger European network of infrastructures, to which each Member State should have a single access portal.
The proposals should draw on existing expertise at the EU[[https://tehdas.eu/]] and national level and on EU- and Member State/Associated Country-tailored procedures for access, use and re-use of patient data. Moreover, synergies with the European Network of Cancer Registries[[https://www.encr.eu/]] should be established to ensure the ECPDC will create an ecosystem on knowledge of cancer. It could also include a call centre function.
In particular, proposals should take account of the results of a recently launched call on a pilot project for an EU infrastructure ecosystem for the secondary use of health data for research, policy-making and regulatory purposes[[Funding & tenders (europa.eu)]], the future EU legislation on European Health Data Space (EHDS)[[Future EC proposal on the use of data for healthcare and re-use of data for policymaking, regulatory purposes and research, to be adopted in 2022]], the future Cancer Survivor Smart-Card[[As published on the Funding & Tenders Portal]], the cancer use case under the 1+Million Genomes initiative (1+MG)[[1+ Million Genomes | Shaping Europe’s digital future (europa.eu)]], the Cancer Imaging Initiative[[Funding & tenders (europa.eu)]] as well as the European Open Science Cloud[[https://ec.europa.eu/info/research-and-innovation/strategy/strategy-2020-2024/our-digital-future/open-science/european-open-science-cloud-eosc_en]]. Successful applicants will be asked to liaise with these different initiatives where applicable[[Applicants are not expected to contact these initiatives before the submission of proposals]], with the Commission acting as a facilitator.
Accordingly, proposals should cover all of the following activities:
- Actively engage and facilitate assessment of relevant existing patient-controlled health data networks at the EU and Member State/Associated Country level, to assess how the ECPDC will integrate and interact with existing national care pathways and the IT systems. A multidisciplinary team, including also users such as patients, care professionals and researchers, should be involved in the development of the proposed federated network.
- Develop a roadmap outlining the necessary intermediate steps towards the creation of the federated network of national health data infrastructures, including technical requirements, governance aspects and timelines.
- Design and perform a testing phase of the network before its release, allowing the adjustment of its tools/functionalities, validate the proposed approach and inform on how it could be scaled and sustained.
- Analyse and provide solutions for extraction of health data, e.g. from the electronic health records, genomic databases (e.g. 1+MG)[[1+ Million Genomes | Shaping Europe’s digital future (europa.eu)]], the Cancer Imaging Initiative[[Funding & tenders (europa.eu)]] and the future Cancer Survivor Smart-Card[[Funding & tenders (europa.eu)]]. Data protection rules should be taken into account.
- Analyse and provide solutions for cross-border transfer of personal data and options to access and store patient data, taking into account the eIDAS, GDPR, other EU and national legislations, and the integration of the ECPDC within the European Health Data Space.
- Establish robust communication and effective information exchange between diverse actors such as cancer patients and survivors, formal and informal caregivers, policy makers and researchers.
The funded actions should build upon resources made available by the Knowledge Centre on Cancer[[Especially through the ’European Cancer Information System (ECIS)’, see https://knowledge4policy.ec.europa.eu/cancer_en]], and complement actions under the Europe’s Beating Cancer Plan[[Including the planned Cancer Inequalities Registry, see work programme for 2021 for EU4Health Programme at: https://ec.europa.eu/health/sites/default/files/funding/docs/wp2021_annex_en.pdf.]], including the Cancer Imaging Initiative[[Funding & tenders (europa.eu)]], and the future European Health Data Space[[https://ec.europa.eu/health/ehealth-digital-health-and-care/european-health-data-space_en]].
Furthermore, all projects funded under this topic are strongly encouraged to participate in networking and joint activities with other ongoing projects under the mission on cancer (especially with "UNCAN.eu") and other cancer relevant projects, as appropriate. These networking and joint activities could, for example, involve the participation in joint workshops, the exchange of knowledge, the development and adoption of best practices, or joint communication activities. This could also involve networking and joint activities with projects funded under other clusters and pillars of Horizon Europe, or other EU programmes, as appropriate.
The Commission may facilitate Mission-specific coordination through future actions. Therefore, proposals should include a budget for the attendance to regular joint meetings and may consider covering the costs of any other potential joint activities without the prerequisite to detail concrete joint activities at this stage. The details of these joint activities will be defined during the grant agreement preparation phase and project duration. In this regard, the Commission will take on the role of facilitator for networking and exchanges, including with relevant initiatives and stakeholders, if appropriate.