Develop and validate a set of quality of life and patient preference measures for cancer patients and survivors

Cancer patients and survivors have specific and currently largely unmet needs. These require deeper insights into quality of life aspects, patient preferences and unmet needs so that health and care systems can better address them. This will improve patients’ and survivors’ quality of life and ensure that they can achieve personal and professional goals, including return to work if they wish so, while respecting individual, social and cultural rights and values. New metrics, self-reported evidence from the perspective of those who are affected, and an expanded high-quality data collection and analysis, using appropriate digital tools, are needed to adequately capture quality of life aspects of cancer patients and survivors. This should serve to orient clinical practice as well as health, social care, and employment policies with the goal of delivering innovation and improving the quality of life of cancer patients, survivors and their families to the highest possible levels, and facilitating their return to work and active participation in society.

Proposals under this topic should aim for delivering results that are directed and contributing to all of the following expected outcomes

• Cancer patients, survivors and caregivers will benefit from enhanced quality of life, more effective and less burdensome treatments with better supportive care and counselling approaches.
• Health care professionals, supportive workers, counsellors and industry will be better aware of the (unmet) needs, expectations and preferences of cancer patients, survivors and their relatives and be compelled to address them.
• Regulators and institutions will have a set of metrics, which they can include in decision making about risks and benefits of new health interventions.
• Health Policy Makers will have a set of metrics at their disposal, which they can include in their health information and performance measurement systems.
• Labour market and social protection policy makers will benefit from additional evidence to consider in the design of labour market and social protection policies that are facilitating return to work and active participation in society.

The long-term goal of the Mission on Cancer is to support the development of a framework of newly defined, harmonised and systematic surveys, as well as to collect new and update existing quality of life data and registries information, using appropriate digital tools. These surveys should be launched regularly across all countries and be reviewed with researchers, care providers, health insurance companies, industry as well as policy makers so that more timely, supportive and affordable care can be provided and relevant policy measures can be taken.

Proposals should address all of the following:

• Conduct analyses of existing quality of life data from studies, surveys and registries together with patients and with a particular focus on patients’ needs, including return to work. These analyses serve to identify problems, fill gaps and validate sets of minimal quality of life measurement tools and approaches for different types of cancer.
• Set up collaborative approaches with patients, communities and multidisciplinary research teams (for example in the form of living labs, making use of citizen science, social innovation or other participatory research methods). Within this co-design process, quality of life measurement tools and approaches should be developed to capture key elements of quality of life from the perspective of those affected by cancer, which are not captured (adequately) with established metrics.
• These metrics should cover subjective perceptions of the positive and negative aspects of cancer patients’ symptoms, including physical, mental, emotional, social, cognitive functions, disease symptoms and treatment side effects as well as needs for palliative care.
• Prepare and conduct a pilot of newly defined, harmonised and systematic quality of life surveys across the EU-27 and Associated countries, reflecting both its diversity (social, cultural, geographic, demographic, health and social protection systems) and unique differences in incidence and mortality of cancer indications. The surveys should gather data using established quality of life metrics and serve to validate the newly developed metrics focussing on cancer, making use of digital tools for data gathering and analysis where relevant.
• These surveys should form the basis for a comprehensive comparison of the quality of life of cancer patients and survivors across and within countries, as well as between different groups, and prepare the ground for future regular, more extensive high-quality data collection.
• The influence of age and early-life factors and determinants; genetic risk, socio-economic status; environmental factors; behavioural, including lifestyle risk factors; as well as social, cultural, sex and gender aspects including inequalities (e.g. access to care), should be taken into account across all aspects mentioned above.
• The most promising quality of life and preference measures and metrics should be validated.

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, in order to produce meaningful and significant effects enhancing the societal impact of the related research activities.

Due consideration should also be given to other relevant EU-funded initiatives^[1]. Successful applicants will be asked to liaise with these different initiatives where applicable, with the Commission acting as a facilitator^[2].

The funded actions should build upon resources made available by the Knowledge Centre on Cancer^[3], and complement actions under the Europe’s Beating Cancer Plan^[4], and possibly Horizon Europe Partnerships^[5].

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 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. Of particular importance in this context is topic HORIZON-MISS-2021-COOR-01-01, “Coordination of complementary actions for missions”.

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.

Social Innovation
Social sciences and humanities
Societal Engagement

[1]Such as HORIZON-HLTH-2021-DISEASE-04-01 (Improved supportive, palliative, survivorship and end-of-life care of cancer patients), HORIZON-HLTH-2021-CARE-05-02 (Data-driven decision-support tools for better health care delivery and policy-making with a focus on cancer).

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

[3]Especially through the ’European Guidelines and Quality Assurance Schemes for Breast, Colorectal and Cervical Cancer Screening and Diagnosis‘, and the ’European Cancer Information System (ECIS)’, see https://knowledge4policy.ec.europa.eu/cancer_en

[4]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.

[5]https://ec.europa.eu/info/research-and-innovation/funding/funding-opportunities/funding-programmes-and-open-calls/horizon-europe/european-partnerships-horizon-europe_en