Purpose and Mission
To this end, COREON seeks a dialogue with policymakers, legislators and regulators, supervisory bodies, patient organizations and other stakeholders in (observational) health research. COREON is seen by, among others, the Ministry of Health, Welfare and Sport as an important discussion partner regarding (observational) health research. The Ministry therefore regularly invites COREON to comment on proposed legislation at an early stage.
Within current legislation and regulations, COREON focuses on practical solutions that don’t complicate research unnecessary, looking for acceptability and consensus among stakeholders. COREON also assesses upcoming legislation and regulations, including in the European context, with a view to the feasibility of (observational) health research.
COREON designs concrete and directly applicable guidelines for handling health data and (human biological and image) materials, based on existing laws and regulations. With this, COREON helps researchers to interpret laws and regulations responsibly and to put them into practice, without unnecessary obstacles to (observational) health research. The codes of conduct and practical guidelines of COREON bridge the gap between legislation and practice and provide guidance where regulations are lacking.
As a partner, COREON plays an important role in the Service Desk for Ethical, Legal and Social Issues (ELSI Service Desk). This national service desk helps researchers, ethicists, lawyers, policy advisers and patient representatives to address ELSI (Ethical, Legal, Social Implications) issues by providing information and advice.
The participating organizations want to be able to conduct high-quality research. COREON sees such research as a public interest from which patients and citizens can benefit. At the same time, COREON recognizes that privacy rights must be protected. COREON therefore seeks a balance between the public interest and privacy rights, while safeguarding the quality of (observational) health research.
In addition, COREON recognizes that it is necessary for researchers within the participating organizations to have the correct knowledge, skills and guidelines to be able to conduct the research within the applicable laws and regulations.
COREON is a network in which experiences are exchanged and common points of view and best practices are developed. COREON works closely with MLC Foundation. This allows it to use the expertise available there in the field of data protection, ethics and governance to achieve its objectives. Thanks to this collaboration, COREON can also provide its participants with good quality advice on the application of relevant laws and regulations. MLC Foundation also plays a major role in the development of COREON products (codes of conduct, guidelines and statements).
The knowledge available within COREON is directly accessible to health researchers, lawyers and DPOs. Vice versa: because COREON is formed by organizations involved in (observational) health research, COREON knows immediately what transpires and what health researchers, lawyers and DPOs encounter.
COREON's policy and the prioritization of subjects is determined in joint consultation between the participating organizations. Proposed solutions are tested for effectiveness by the representatives of the participating organizations. Local issues and upcoming regulations are regularly discussed during the participants' meetings.
Temporary workgroups explore incidental topics further. Participating organizations are encouraged to participate in this, so that the final products of COREON (codes of conduct, notes, guidelines, statements, etc.) fit as closely as possible within the daily practice of health researchers, lawyers and DPOs.
The importance of COREON for participating organizations does not only lie in its involvement in the topics that are discussed. COREON is also very relevant because it can achieve at a national level where individual organizations fail.
In addition, COREON is a respected consultation partner for other organizations that have similar or related objectives. These are in particular Biobanking and Biomolecular Research Infrastructure, the Netherlands (BBMRI.nl), Health-RI, Dutch Clinical Research Foundation (DCRF), Dutch Epidemiological Society (VvE), Dutch Association of Medical Ethics Review Committees (NVMETC), and The Royal Netherlands Academy of Arts and Sciences (KNAW).
COREON organizes its own session every year during the national epidemiologists’ conference, WEON. This conference offers (young) epidemiologists the opportunity to present and discuss the results of their research at a national level (source: website Dutch Epidemiological Society; VvE). During the COREON session, a current topic that influences or even determines the preconditions for epidemiological research is always up for discussion. In the past, for example, disclosure of research data according to the FAIR principle (Findable, Accessible, Interoperable, and Reusable) and the General Data Protection Regulation that had just entered into force were discussed.