bbmri-eric website
Topic: Digital ELSI services for cancer research
Collection of digital ELSI tools and services in cancer research.
Purpose
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.
Problem
Digital health encompasses tools, technologies and services that enable health teams (including all public, private, academic and infrastructure organizations 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 & services
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 personalized 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.
Relevant Literature
Mayrhofer, Michaela Th, Verena Borecky, Zisis Kozlakidis, Charitini Stavropoulou, R Surya, Nazila Ahmadlou, and Rosana Farjaminejad
Zenodo, October 17, 2024.
Deficient response to COVID-19 makes the case for evolving the public health system
Dixon BE, Caine VA, Halverson PK
Am J Prev Med, July 24, 2020.
Bogaert B, Buisson V, Kozlakidis Z, Saintigny P.
Critical Reviews in Oncology/Hematology. March 23, 2022.
Al Knawy B, McKillop MM, Abduljawad J, et al.
JAMA Network Open. February 1, 2022.
Cancer Core Europe: a translational research infrastructure for a European mission on cancer
Eggermont AM, Apolone G, Baumann M, et al.
Molecular oncology. March 1, 2019.
Mind the gap: from tool to knowledge base.
Mayrhofer MT, Schlünder I.
Biopreservation and Biobanking December 1, 2018.
World Health Organization, 2018. WHO Classification of digital health interventions v1.0.
Topics
Challenges
Keywords
ELSI (7)DIDN’T FIND WHAT YOU WERE LOOKING FOR?
