Joint Action on Networks of Expertise on Cancer

ongoing

The Joint Action on Networks of Expertise (JANE-2) is aimed at creating seven EU networks of a new kind, named “Networks of Expertise” (NoEs), in the cancer area, and allowing them to start fulfilling their mission. They will cover the following areas of interest: 1. complex and poor-prognosis cancers; 2. palliative care; 3. survivorship; 4. personalized primary/secondary prevention; 5. omic technologies; 6. hi-tech medical resources; 7. adolescents and young adults with cancer These NoEs should provide services to the European cancer community, each of them focusing on its subject. These services may include, but will not be limited to, the following: a) producing, or supporting, clinical practice guidelines and/or general recommendations for medical professionals, patients, the public; b) raising public awareness and carrying out advocacy/policy actions; c) developing healthcare organization models; d) developing educational initiatives/tools for medical professionals and patients e) undertaking efforts to promote research; f) developing quality criteria for accreditation/endorsement mechanisms; g) engaging patients and the public; h) others. Conceptually, therefore, NoEs will provide services to the cancer community, first to health care providers directly reaching out to patients. This is a difference in principle from other EU networks, such as European Reference Networks (ERNs) on rare cancers, which gather health care providers specializing in rare cancers, and the new Comprehensive Cancer Infrastructure Network (CCIN), which is made up of EU comprehensive cancer centres and their infrastructures. This also implies that NoEs should formally incorporate other entities in addition to health care providers, i.e. scientific and professional societies, patient advocacy groups, research institutes devoted to items such as molecular biology, public health, health economics, etc. Based on the discussion already held in JANE, NoEs will be created within JANE-2, i.e. they will be built, and their activities will be funded in the first four years, through work packages (WPs) of JANE-2. Undoubtedly, NoEs will have to find tools by which their members will be able to interact with their Member States (MSs), which also has implications for their sustainability. As long as they have to provide services, or coordinate service provision, at the EU level, NoEs should be made up of a relatively limited number of partners having a European scope, or a coordination mandate at the national level, in such a way that they may behave as European networks of national/regional networks. In principle, the “high-contribution” partners within NoEs will have national representatives of MSs’ infrastructures and/or coordinators or domain/task leaders. On the other hand, “low-contributors” and “observers” will have the main task of conveying the whole European communities involved and/or the national communities. Of course, NoEs may be proactive in bringing about the creation of national/regional networks also building on JANE-2. This means that, in addition to competent authorities and their affiliated entities participating in JANE-2, NoEs will also encompass partners to be selected in the future, called “collaborating stakeholders”. When covering substantially different scopes within their mandate, NoEs will foresee different domains, each coordinated by a domain leader. The wide range of objectives that NoEs will fulfil may bring about some degree of overlap with other EU networks (i.e. CCIN and ERNs), but also scientific and professional societies at the European and national level, patient advocacy groups, etc. An effort has been made within JANE to assure that areas of overlaps may translate into synergies (by pursuing complementarity and avoiding different entities carrying out the same tasks). In brief, networking is a great added value of European health care. NoEs will be an attempt to implement a completely