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.