An information portal for the European Cancer Patient Digital Centre -

Improving the quality of life of cancer patients, survivors and their families is one of the objectives of the Mission on Cancer and the Europe’s Beating Cancer Plan. The future European Cancer Patient Digital Centre (ECPDC)[1] will provide digital services to support cancer patients, survivors and caregivers to facilitate their access to quality information and data sharing. The aim of this action is to design, develop, deploy and operate a pilot information portal of the ECPDC to support the information needs of patients, survivors and caregivers and covering all the spectrum of the cancer patient journey. Specific Artificial Intelligence (AI) tools are developed and implemented to timely update the information provided and facilitate the user experience.

Proposals under this topic should aim to deliver results that are directed and tailored towards and contribute to the following expected outcomes:

• The ECPDC information portal is an entry point to quality information for cancer patients, survivors, their families and care givers, covering the cancer patient journey from diagnosis to treatment and post treatment care and life after cancer.
• The ECPDC information portal complements the Knowledge Centre on Cancer (KCC)[2] by integrating additional trusted information on cancers beyond what is currently available in the KCC.
• The ECPDC information portal implements human-centric AI-based solutions to manage and systematically update the information provided to the users and to facilitate the user experience.

Proposals should address all the following:

• Design, develop and deploy, a pilot ECPDC information portal to complement the existing Knowledge Centre on Cancer (KCC). The knowledge base of the information portal will cover the cancer patient journey from diagnosis to life after cancer. It will provide evidence-based information on diagnosis, treatment options (including side-effects and late-effects of treatments such as fatigue, chronic pain, fertility, psychological and other health issues), rehabilitation, management of recurrence and palliative care.
• The information to include in the knowledge base, complements information provided through the KCC, adding to it and expanding its contents. Attention should be given also onto those cancers with a 5-year overall survival less than 50% from time of diagnosis and as well as to those relevant to paediatric cancers. It relies on scientific evidence and European, international or, where relevant, national guidelines.
• The selection of the information provided to the users should be based on explicit and robust criteria and be transparent.
• Provide a validated workflow for reviewing, selecting and timely updating the knowledge base when new clinical information and scientific evidence arise. The development and implementation of human centric AI-based tools may facilitate the reviewing, selecting and updating process.
• An AI-based virtual assistant is implemented in the portal to interact with users and improve their experience by delivering information tailored to user cultural background, individual (clinical) circumstances, needs, preferences and/or expectations. This virtual assistant should be designed and tested in real-world patient populations for acceptability and value provided. Language should be non-technical and using lay terms.
• All the developed IT-solutions and workflows should be open source and made available. The involvement of AI-researchers, clinicians, epidemiologists, guideline developers, service design specialists and patient organisation representatives are envisaged.
• The pilot ECPDC information portal should also include other information that may be relevant to cancer patients and survivors and their families such as options to cross-border health care, participation to clinical research, psychosocial and legal support options, guidance and support for returning to study or to work, financial issues and survivors’ rights.
• To ensure an efficient and useful digital platform for patients, the pilot ECPDC information portal should be tested and validated by an appropriate number of cancer patients and survivors of different cancer types and age groups. Solutions to identified challenges should be provided and implemented. The action will also identify gaps in information relevant to patients and inform policy decisions.
• A feasibility assessment of linking the pilot ECPDC information portal to the Knowledge Centre on Cancer, including operational solutions and sustainability, should be provided.
• Regular monitoring, supervision and evaluation by KPIs should be conducted in order to ensure patient benefit.

Due consideration should be given to initiatives such as: EU-CAYAS-NET[3]; ERN PaedCan and other relevant EU initiatives. Successful applicants will be asked to liaise with these and other initiatives where applicable[4].

This topic requires the effective contribution of 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 will be asked to join the 'Quality of Life' cluster for the Mission on Cancer established in 2023[5] and 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: 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. 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] https://knowledge4policy.ec.europa.eu/cancer_en

[3] https://siope.eu/news/news-from-eu-cayas-net-Oct22/

[4] Applicants are not expected to contact these initiatives before the submission of proposals

[5] In order to address the objectives of the Mission on Cancer, participants will collaborate in project clusters to leverage EU-funding, increase networking across sectors and disciplines, and establish a portfolio of Cancer Mission R&I and policy actions.

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