Towards the creation of a European Cancer Patient Digital Centre
The overall goal of the Mission on Cancer and Europe’s Beating Cancer Plan includes a better quality of life for patients and their families living with, and after, cancer.
Project results will support the creation of a virtual European Cancer Patient Digital Centre (ECPDC), which is a federated network of patient controlled (national) health data infrastructures enabling the voluntary exchange of patients and survivors’ health data in a standardised approach, for primary and secondary use.
To that end, proposals under this topic should aim for delivering results that are directed, tailored towards and contributing to all of the following expected outcomes:
- Citizens, including cancer patients and survivors, are able to donate, access and manage their own clinical data, including patient-reported outcomes (PRO), and have control over the access to these data in a secure, standardised, ethical and interoperable manner.
- Citizens, including cancer patients and survivors, their families and caregivers have access to and use the ECPDC as a global centre of knowledge on cancer, including on prevention, diagnosis, treatment guidelines, treatment side-effects, access to cross-border health care, psychosocial and legal support, including guidance and support on returning to work, addressing financial issues and asserting survivors’ rights.
- Tools are provided to clinicians allowing them to collaborate with patients to develop the best methods of care and personalized treatments regardless of their location.
- Citizens, including cancer patients and survivors, receive information on personalised care through the ECPDC, which monitors data trends and provide insights on treatment side effects and other outcome measures based on standardised patient-reported outcome and experience measures, by aggregating and analysing large data sets using state-of-the-art secure cloud computing and data analytics and visualisation methods and tools, including AI.
- Citizens, including cancer patients and survivors, are empowered in co-deciding on their care as well as in participating in research. The rights of patients are reinforced and their confidence in sharing their data for cancer research, innovation and policy development is increased.
- Researchers, citizens, including cancer patients and survivors, and policy-makers have access to a valuable resource of aggregated patient data that are evolving over time, to correlate different sources of information and whereby disease trajectories of patient’s and survivor’s health could be inferred. This will improve the knowledge and understanding of cancer and its impact on the lives of citizens, including cancer patients and survivors, thus contributing to the development of improved diagnostics, treatment, care and quality of life support and to the development of policies.
Apply by 7 September.