The ELSI Servicedesk consists of a (Dutch) website that offers information using a list of frequently asked questions in several categories, among others about consent procedures and data protection. Examples are: "Where can I find more information about the implications of the GDPR for observational medical research?". Furthermore, the website contains a list of resources, including relevant laws, regulations, and best practices, and a helpdesk where people can ask questions. Project employees and/or other experts, like ethicists or health lawyers, will answer questions. Moreover, the ELSI Servicedesk monitors and observes questions and knowledge gaps. From today onwards, the ELSI Servicedesk is fully operational.
Researchers, health care providers, patient representatives, and policy makers can visit the website (www.elsi.health-ri.nl) for information and advice about questions around personalised medicine research and implementation. They may ask questions (also in English) via the website (www.elsi.health-ri.nl), via e-mail (elsiservicedesk@health-ri.nl) or by phone between 1.30 and 4.00 PM Monday-Thursday (088-1167500).
The ELSI Servicedesk is coordinated from the Netherlands Cancer Institute by Susanne Rebers from the Marjanka Schmidt group, and is initiated by BBRMI-NL and Federa-COREON, financed by the Medicines research programme Personalised Medicine. This programme - a collaboration between ZonMw, Zilveren Kruis and the Dutch Cancer Society - wants to make a structural contribution to the health care of the future, in which each patient can count on personalised treatment. The research programme aims to secure the efficient implementation of personalised medicine in Dutch health care. There are activities in the field of data management, education and communication, and methodology of the valuation of predictive diagnostics to better focus the use of pharmacotherapy. The ELSI Servicedesk is part of Health-RI, the national infrastructure for research on health and personalised treatment.
Susanne Rebers: elsiservicedesk@health-ri.nl