Digital ELSI services for cancer research

Table Of Contents

Overview #

One of the many things the Covid-19 pandemic made visible is that healthcare applications and data are still not easily accessible among healthcare systems due to lack of collaboration between teams and interoperability as well as a lack of data integrity. Moreover, healthcare data are unequally available across the world, including data for cancer services. This compromises the integration of new guidelines into routine practice as well as the quality of digital health outcomes for individuals and society.

Hence, in accordance with the overall goal of the canSERV project to offer a comprehensive portfolio of oncology-related research services available to all scientists in EU member countries, associated countries and beyond, a catalogue of digital services for cancer research was created. The services are completely diverse and are geared towards a variety of users, such as ELSI services for research, as well as tools for cancer patients that are empowering and those for a general public that help manage their cancer pathways. 

Challenge and purpose #

Digital health encompasses tools, technologies and services that enable health teams (including all public, private, academic and infrastructure organisations that provide or support healthcare) to transform care delivery and empower individuals and society to manage health and well-being. However, a key barrier when it comes to digital health tools is that they are often unknown. Researchers as well as cancer patients need to be aware that certain services are available, need to know where to find them and be able to access them in a timely and simple process. 

Catalogue of ELSI tools and services for cancer research #

The following tools and services are managed by canSERV RIs (wholly or partially), and align with the available provision of ELSI services for cancer research: 

  • BBMRI-ERIC, ELSI Helpdesk: The helpdesk is geared towards researchers and offers expertise and sharing of knowledge regarding ELSI issues for the use and benefit of the biobanking community. Moreover, there is a reference to the ELSI Knowledge Base that provides guidelines, trainings, and reading materials based on the ELSI Helpdesk requests. 
  • European infrastructure for translational medicine (EATRIS). Regulatory Services: The service is geared towards researchers. It offers expert opinion, orphan drug designation and scientific advice application at the EMA, pre-clinical and clinical plan development, informal scientific advice with selected national competent authorities for highly complex projects, access to EATRIS Regulatory Database. 
  • The European life-sciences Infrastructure for biological Information (ELIXIR: ELSI guidelines and ELSI services, including ELSI advice upon request. The intended audience are project coordinators. The service includes the ELIXIR ELSI guidelines. 
  • International Agency for Research on Cancer (IARC/WHO). Ethics guidelines toolbox:The toolbox offers a collection of ethics guidelines and links to materials for researchers. 
  • European Marine Biological Resource Centre (EMBRC). Ethics policy compliance check:The intended audience are researchers from a team or organisations in need of a facility or biological resource(s). All requests at EMBRC are being checked for compliance with their mission and ethics policy i.e. the service is only for projects that have been applied for at EMBRC. 
  • Microbial Resource Research Infrastructure (MIRRI): Legal/Regulatory Issues & standards expert cluster. The intended audience for the service are researchers in the public domain, companies, and policy makers. The service includes a public forum, interaction with experts, and advisory services concerning legal/regulatory issues. 
  • Oncology Compass (Switzerland): A library of selected key publications and congress updates which can be filtered and searched by clinical characteristics. The service is intended for researchers and physicians. It entails a library of selected key publications and congress updates which can be searched by clinical characteristics. 
  • Care Across (Europe): A personalised services platform for cancer patients. The service is geared towards cancer patients and caregivers and offers personalised support for cancer patients to improve quality of life. The service seems to be tailored for each type of cancer and moment of treatment. 
  • European Cancer Patient Coalition (ECPC):Policy toolbox (Societal Issues section). The intended audience are researchers, the general public, and patient advocates. The policy toolbox offers information on current policy issues, articles, and videos. 
  • European Clinical Research Infrastructure Network (ECRIN): Regulatory and Ethical Tools. The tool is for people involved in planning, initiating and conducting clinical trials on a national and international level. CAMPUS is a service for promoting and facilitating multi-national clinical research projects in Europe that provides access to regulatory information. 
  • ENRICH Forum (NCI): The Ethical aNd Regulatory Issues in Cancer ResearcH (ENRICH) Forum is a U.S.-based webinar series that discusses emerging ELSI issues in cancer research. 

Relevant literature #

Acknowledgements   #

The work done stems from research conducted in the context of the project canSERV - Providing Cutting-Edge Cancer Research Services Across Europe, which has received funding from the European Union’s Horizon 2020 research and innovation programme under  Grant agreement ID: 101058620. The project started on 1 September 2022 and ended on 31 August 2026, then extended until 28 February 2027.  

cancer, cancer research, ELSI
Updated on 15 July, 2026