Boosting mental health of young cancer survivors through the European Cancer Patient Digital Centre (ECPDC)

Expected Outcome

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

• Through the European Cancer Patient Digital Centre (ECPDC), adolescent and young cancer patients and survivors as well as their caregivers have access to innovative tools and approaches to strengthen their mental health;
• Healthcare professionals have access to innovative tools to monitor and support the mental health of cancer patients and survivors as well as their caregivers
• Researchers and healthcare professionals have access and use reliable patient reported data to better understand the mental health needs of cancer patients and survivors and provide effective care.

Scope

As part of its citizens engagement activities, the EU Cancer Mission has launched a dialogue with young cancer survivors, to better understand the specific needs and challenges faced during and after treatment.

Mental health has been systematically highlighted as a major concern, stressing the importance of access to quality psychosocial support including through virtual, digital means along the different stages of the patient’s journey, at diagnosis, during and after treatment.

The communication on a Comprehensive approach to mental health adopted by the European Commission on 7 June 2023[1] calls for the establishment of a platform to boost mental health of young cancer survivors.

In line with this ambition, the overall goal of this topic is to develop an online platform targeting, adolescents, and young adult (AYA) cancer patients and survivors (age 15-39, age of first diagnosis) to address specifically their mental health needs, throughout their journey, at diagnosis, during and after treatment. In particular:

• The digital platform should be developed as a module to be fully integrated within the European Cancer Patient Digital Centre whose information portal is currently under development (project EU-CIP[2]). Clear links with EU-CIP should therefore be established and solutions developed to link the two projects, including operational solutions and sustainability.
• The platform should include a mix of innovative personalized, evidence-based, and interactive features building on state-of-the-art research to address the mental health needs of AYA patients and survivors[3]. Both cognitive (thinking, reasoning, memory, perceptual etc.), affective (depression, anxiety, etc.), and behaviour change aspects should be considered.
• The innovative nature of proposed solutions should be clearly demonstrated.
• Multi-device compatibility (mobile, tablet, web) and multilingual support to reach diverse populations should be included.
• Specific needs and potential solutions should be discussed and developed in close cooperation with end-users.
• Similarly, the efficacy of the proposed solutions to support and boost mental health of young cancer patients, survivors and their caregivers should be demonstrated by testing and validating them by an appropriate number of end users, with different cancer types and belonging to the targeted age group.
• Develop, test and integrate in the platform innovative tools for collection and analysis of mental health relevant Patient Reported Outcomes Measures (PROMs) and Patient Reported Experiences Measures (PREMs). Effective mining of lived experience data should be enabled to support for example psychometric development and validation, risk modelling, and the co-creation of personalized psychological measures of mental health.
• Therefore tools should be developed and validated in close cooperation with end-users including patients, survivors, healthcare professionals and researchers.
• Develop European Health Data Space (EHDS) aligned guidelines to report and deposit relevant patient reported data collected with the above tools.
• Projects should include an appropriate mix of stakeholders from various disciplines and sectors, including but not limited to physicians, psychologists, nurses, academia, patients and their caregivers, patient representatives, behavioural scientists, cancer survivorship scientists, AI-experts and solutions providers, SMEs, charities and funding agencies, and research organisations.
• Direct involvement of cancer patients and survivors, survivor representative organisations, caregivers is required, along with effective contribution of Social Science and Humanities (SSH) disciplines and the involvement of SSH experts, institutions as well as the inclusion of relevant SSH expertise, in order to produce meaningful and significant results, enhancing the impact of the proposed activities.
• Due consideration should be given to initiatives such as: EU-CAYAS-NET[4]; ERN PaedCan[5], Pancare[6] EUonQoL[7], e-Quol[8] and other relevant initiatives, including projects funded under the EU Cancer Mission topic HORIZON-MISS-2024-CANCER-01-05: Improving the understanding and management of late-effects in adolescents and young adults (AYA) with cancer[9].

Successful proposals will be asked to join the 'Quality of life” cluster for the EU Cancer Mission[10] and should include a budget for networking, attendance at meetings, and joint activities[11]. The Commission will facilitate coordination of these activities.

[1] cef45b6d-a871-44d5-9d62-3cecc47eda89_en

[2] EUropean Cancer Information Portal | EU-CIP | Projekt | Fact Sheet | HORIZON | CORDIS | European Commission

[3] Examples of services include (non-exhaustive list): Human-centric AI-powered chatbots for providing relevant information for Cancer Survivors, e.g. on coping with psychosocial issues. Mood and symptoms tracking with AI insights to detect patterns and suggest interventions. Interactive AI-powered self-help tools, such as mindfulness and relaxation exercises (guided meditation, breathing techniques) or goal setting and journaling tools for self-reflection and progress tracking. Peer-to-peer support groups with moderated forums or live chatrooms (community forum). Gamified challenges (e.g. wellness challenges, gratitude exercises) to encourage engagement. Safe social networking with privacy controls for survivors to connect. etc.

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

[5] https://paedcan.ern-net.eu/

[6] anCare - Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer

[7] Quality of Life in Oncology (euonqol.eu)

[8] https://equolproject.eu/

[9] EU Funding & Tenders Portal

[10] In order to address the objectives of the EU Cancer Mission, 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.

[11] Examples of these activities are research or research capacity, 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. Proposals are not required to include details of these activities, as they will be defined during the grant agreement preparation phase and during the life of the project