Survivorship & Real-world Outcome Research
Early diagnosis, improved supportive care, targeted therapeutics, and more personalised treatments have boosted survival rates for cancer patients over the past decades. Despite this, cancer survivors are often confronted with a broad spectrum of late adverse treatment effects which can impact their life expectancy and quality of life. Some must also deal with social discrimination due to their slower performance, chronic fatigue or partial, which can present barriers to getting employment, education, insurance or mortgages disability.
EORTC is actively involved in a European network of organisations and patients cohorts that aims to improve social inclusion among cancer survivors by measuring the problem, assessing its economic burden and formulating evidence-based recommendations.
Prof. Françoise Meunier explained the challenges faced by cancer survivors in a TEDx speech at the 2016 TEDx Monte Carlo, called “Cancer Survivors Should Not Pay Twice”
Cancer Survivorship Summit
In January 2014, the first EORTC Cancer Survivorship Summit was organised to get clinicians, researchers, social workers, patients, insurers, bankers and policy makers talking. The summit was a forum to present research addressing health, psychological and socio-economic issues following cancer treatment and set the stage for action to address these within Europe.
Since then, EORTC has continued to stimulate interaction between patients, health care providers, insurers, bankers, and politicians, in the belief that this can lead to concrete actions to benefit cancer survivors. A second Cancer Survivorship Summit was held in 2016 focusing on the specific topic of Cancer Survivorship and social challenges.
Research projects and selected survivorship publication
Although trials may have ended, for decades, EORTC has continued collecting patient well-being data. These efforts have built a unique and rich clinical data pool that can be used to look at medical, psychosocial and socio-economic challenges faced by cancer survivors. Our research underpins evidence-based recommendations for individual survivors and policy makers on the social impact of surviving cancer. We are currently researching ways to minimise cancer survivors’ social exclusion (for instance, promoting equal access to jobs, insurance and mortgages.)
- EORTC tumour groups
- European Network of Cancer Registries (ENCR)
- Macmillan Cancer Support
- CANWON (cancer and work network)
- European Cancer Leagues
- patient advocacy groups
- Individual active patient advocates
- Key cancer journals (e.g. European Journal of Cancer, Journal of Cancer Policy)
- Interested health economists
Real-world and outcome research
A clinical trial looks for more effective treatments in a controlled environment where patients are carefully selected against a set of defined criteria, to ensure its results are valid and reproducible. But this does not always represent real-world situations.
EORTC is conducting epidemiological research in collaboration with population-based cancer registries, aiming to bridge the gap between clinical research and real-world cancer care by comparing clinical research and population-based cancer registry data. This provides unique challenges around data merging and big data analysis, and EORTC is applying the latest data management techniques in this study.
This epidemiological research touches a number of areas, notably:
- The implementation of practice-changing trials in the real-world population;
- The representativeness of trial populations versus the whole patient population;
- Comparing survival, quality of life and late adverse effects among patients treated inside and outside clinical trials;
- Methodological development, such as mathematic modelling to predict real-world effectiveness or pragmatic trials in oncology.
- The Netherlands Comprehensive Cancer Organisation (IKNL),
- Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES),
- Belgian Cancer Registry (BCR),
- The Netherlands Cancer Institute (NKI),
- UMC Utrecht, (Julius Center),
- University of Twente,
- European Network of Cancer Registries (ENCR);
- RARECARE, (RARECARENet)