Published February 29, 2024 | Version v2
Project deliverable Open

Gap analysis report on digital ELSI services for cancer research, including the identification of two exemplar areas for tool development

  • 1. ROR icon Biobanking and Biomolecular Resources Research Infrastructure Consortium
  • 2. ROR icon City, University of London
  • 3. International Agency for Research on Cancer
  • 4. City University of London Bayes Business School

Description

Europe as a whole faces a significant cancer burden. While representing less than 10% of the global population, it is dealing with a quarter of all cancers, reflecting an increasingly ageing population with comorbidities, as well as significant and persistent social and healthcare provision inequalities. It is estimated that over 3.9 million Europeans were diagnosed with cancers in 2018 (immediately pre-pandemic) and that almost 2 million in the same year died from these diseases. A slight majority of cancer patients (55%) will gain a prolonged disease-free survival, and even cure, but big killers with a relatively low impact of treatment remain, such as lung cancer (20% of all cancer deaths), colorectal cancer, advanced breast cancer, and pancreatic cancer. 

To date, the ELSI services landscape in Europe remains highly fragmented and diverse. There exist individual Research Infrastructures (RIs), associations or institutions that have implemented innovative helpdesk components.  These, however, tend to work within institutional remits (e.g., clinical trials, biobanking) or geographical premises (e.g., member countries) and not across entire domains, such as cancer. The European Missions, e.g., Mission on Cancer, signified a step-change in approach, unifying efforts across domains, and this is reflected in the approach of all canSERV WPs and partners. Deliverable 11.3 provides a gap analysis report on existing ELSI digital services for cancer research, and based on the above outcomes, the identification of two exemplar areas for tool development in the future, that will be complementing those ELSI services by empowering individuals, such as cancer patients, and society to manage their cancer pathway(s).

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Additional details

Funding

European Commission
canSERV - Providing cutting edge cancer research services across Europe 101058620