cancer research coordination and outcomes in Europe
Julio E. Celis,a Anna Rouillard,a Ingrid van den Neucker,a Maria Ferrantini,b Silvia Paradisi,b Carlos Segovia,c Teresa Corral,c Rosana Peiró,d Dolores Salas,d Christine Berling,e Fabien Calvo,e Agnès Buzyn e
Main messages
• Priority-setting in European cancer research, led by the scientific community and involving the widest possible range of stakeholders, is an important starting point for coordination initiatives.
• There is no ‘one-size-fits-all’ solution to coordinating research into all areas of knowledge; tailored responses are needed, adapted to the respective area of cooperation and the needs of the professionals and citizens involved.
• Lessons learned from coordination initiatives at national and European level may be used to help develop novel and pragmatic solutions.
• Strong commitment and support from the European Commission and other EU bodies is needed in order to facilitate coordination of cancer research between funding organisations.
Introduction
The call for more efficient coordination of cancer research in Europe dates back to Commissioner Busquin, who in September 2002 supported the creation of a
a European CanCer Organisation; Brussels, Belgium; b Istituto Superiore di Sanità; Rome, Italy; c Institute of Health Carlos III; Madrid, Spain; d Centre for Public Health Research; Valencia, Spain; e Institut National du Cancer; Boulogne-Billancourt, France
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European Research Area (ERA) for cancer (1). Cancer research in the European Union was fragmented and often duplicative, and there was a clear need for developing a global strategy that could facilitate the development of major advances and their delivery to civil society. Barriers to collaboration between Member States needed to be identified and addressed to expedite cross-border collaboration. The opportunity for such a change was provided by the Sixth Research Framework Programme (FP6), which represented the first explicit support for clinical research by European institutions.
In 2006, the Eurocan+Plus Project was launched within this framework to explore the feasibility of improving cancer research in Europe through better coordination of stakeholders, thereby delivering optimal cancer care to patients. The largest ever consultation of researchers, cancer treatment facilities, administrators, public health and health care professionals, funding agencies, industry, patients’ organisations and patients in Europe, Eurocan+Plus highlighted the importance of dialogue between funders and scientists for the conceptualisation of models to meet the needs of the entire community, as well as the need to involve patients in the identification of priority areas for cancer research coordination. The project stressed the need to improve collaboration between basic/preclinical and comprehensive cancer centres (CCCs), institutions in which care and prevention is integrated with research and education, and it proposed the creation of a platform for translational cancer research composed of interconnected cancer centres with shared infrastructures and collaborative projects to facilitate rapid advances in knowledge and their translation into better cancer care (2). Furthermore, the project proposed the creation of an ERA-NET to support translational cancer research.
The Seventh Framework Programme (FP7) built on the foundations laid by FP6 and increased the focus on personalised cancer care (3). Both the EurocanPlatform, a Network of Excellence of cancer centres, and the ERA-Net on Translational Cancer Research (TRANSCAN), a consortium of funding organisations, received funding in FP7, and their activities are still in progress.
Recently, the Innovation Union – Europe´s strategy for growth – has pledged to bring discoveries to the market/bedside more quickly (4). However, translating discoveries into clinical applications has proven complex, as there are many barriers that hinder the process and slow down the development of innovations. To name a few, these include (a) the complexity and length of the innovation cycle, a chain with defined phases and check points, which involves changing teams, multidisciplinarity, infrastructures, clinical trials, regulatory and intellectual property issues, as well as educational matters; (b) the number of stakeholders involved and a fragmented scientific community; (c) insufficient research coordination at national, regional and EU level; (d) sustainability issues
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in research funding; and (e) lack of models to incentivise and reward team efforts. In view of the spiralling costs of cancer care and the increasingly ageing population, decision-makers need to prioritise cancer research coordination in order to create innovations that bring benefits for European citizens, the health care system, and the economy in general. Health is wealth! (5)
With the firm conviction that coordination is the only way to address these challenges, the EPAAC partners in charge of research coordination undertook the task of developing a concerted approach for coordination of one third of cancer research, amounting to around €1.5 billion, from all funding sources across the European Union by 2013. Given the limited duration of the project and the level of resources allocated to this ambitious goal, the partners decided to focus their efforts on selected areas/topics where there was a clear need and desire for coordination.
In the next section, we describe the innovative approaches that have emerged from our work. Even though full methodologies for coordination in specific areas are still under development, preliminary progress has been promising, and new partnerships and pilot projects have the potential to change the way cancer research is carried out between Member States.
An innovative approach to cancer research coordination:
setting the stage and objectives
In general, priorities for funding of cancer research are frequently set at the national or regional level in the 28 EU Member States, and there are enormous disparities in methodologies, priorities and financial resources between countries, although there is now a general trend towards national coordination, at least in some countries. Lack of coordination leads to duplication of research efforts, knowledge gaps, ultimately limiting the overall progress against this disease.
Major health challenges such as cancer cannot be addressed without strategic, long-term, and evidence-based policies to support, guide and sustain research efforts. National Cancer Control Programmes (NCCPs) are the main instrument promoted by the World Health Organization (6); their development is a highly conceptualised pursuit that hinges on evidence-based strategies, that is, service delivery mechanisms and cost-effective interventions based on the latest scientific evidence (see Chapter 8). In this sense, NCCPs are undoubtedly a positive development and can contribute to better integration of health systems.
However, the breadth and scope of the cancer challenge in Europe merits a move from national and/or regional efforts to continent-wide collaborations, and a concerted effort involving all stakeholders is viewed as essential to speed
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up the conversion of laboratory discoveries into new treatments and diagnostics (7).
Taking into account the above considerations, our team prioritised the participation of all stakeholders in the cancer continuum (governmental funding organisations, patients, charities, industry, scientists and clinicians) to tackle the problem. The European CanCer Organisation (ECCO) (www.ecco-org.eu) – an umbrella organisation that embraces more than 50,000 cancer professionals working at various stages of the cancer continuum, from basic and clinical research to patient treatment, care, and education – was entrusted with the task of leading EPAAC’s work on cancer research. From the outset, ECCO underlined the need for coordination to be fostered in areas of real benefit and sought to build on synergies between countries and organisations across cancer research and care.
Together with its Associate Partners, the French Institut National du Cancer (INCa) (co-leader of the project team), the Italian Istituto Superiore di Sanità (ISS), the Spanish Institute of Health Carlos III (ISCIII) and the Spanish Centre for Public Health Research (CSISP), ECCO affirmed a joint commitment to approach this ambitious undertaking in a spirit of innovation and inclusiveness, agreeing on three specific objectives:
• To identify and prioritise areas in cancer research across the continuum that will benefit from coordination and cross-border collaboration;
• To identify mechanisms for a concerted approach for coordination of one third of cancer research from all funding sources by 2013;
• To develop research coordination pilot projects in selected areas as proof of concept for the above mechanisms.
Progress made towards achieving these objectives is described below, with a specific focus on the innovative methodologies made possible by the partnership approach.
Identification and prioritisation of areas in cancer research that could benefit from coordination and cross-border collaboration Using an inclusive approach to bring in all relevant disciplines to the discussions, we first sought to identify and prioritise areas of cancer research that could benefit from European coordination. Input was sought from the cancer research community (researchers, clinicians, public health experts, industry and patients) as well as from funders.
The first step in the process was to define categories for a questionnaire to be used in a wider consultation process. For this task, we approached the
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European Academy of Cancer Sciences (EACS), an independent advisory body of eminent oncologists and cancer researchers and an EPAAC collaborating partner. Fellows of the Academy gave precise examples of cancer research areas in which coordination would be beneficial. Based on their advice, we structured our questionnaire around the following research categories: basic, translational, clinical, population science and prevention, nursing, supportive and palliative care, and quality of care.
Identification and prioritisation of areas in cancer research following consultation with the cancer community
Over 200 experts from the cancer field, including patients, researchers, epidemiologists, public health experts, biotechnology experts, immunologists, clinicians, nurses and allied professionals, pathologists and industry representatives1 gave feedback through the questionnaire. Respondents were asked to prioritise the categories of cancer research by the perceived need for coordination at European level and to provide precise examples of how coordination could benefit specific areas or topics within these categories (Table 7.1). The percentages indicated in the right hand column represent the proportion of respondents who believed there is high value in European coordination in the respective area of cancer research. For the three topics highlighted in red (subsequently chosen as areas for the development of pilot coordination projects), respondents’ recommendations for sub-topics are specified.
Broader consultation of funding organisations: funding landscape and lessons learned
In parallel to identifying and prioritising areas of cancer research for coordination, we consulted cancer research funding organisations to gain insight into the funding landscape at the level of individual European countries. The European Research Managers’ Forum’s Second Cancer Research Funding Survey (8) provides an overview of direct cancer research spending by funding organisation in Europe. However, an understanding of mechanisms for decision-making, funding and execution of cancer research were considered central to our work, as were actual immediate and short/medium-term priorities in the different areas of cancer research. Information was collected from 48 organisations, both public and private, in 18 Member States (Box 7.1).
1 The questionnaire was distributed to the following organisations: Federation of the Societies of Biochemistry and Molecular Biology, European Molecular Biology Organisation, European CanCer Organisation member societies and Patient Advisory Committee, European Molecular Biology Laboratory, European Federation of Biotechnology, European Federation of Immunological Societies, Organisation of European Cancer Institutes, European Society of Pathology, EurocanPlatform, European Academy of Cancer Sciences, International Epidemiology Association – Europe, European Federation of Pharmaceutical Industry Associations, European Association for Bio-Industries, European Coordination Committee of the Radiological, Electromedical and Healthcare IT Industry, EUCOMED, European Cancer Patient Coalition, European Patients Forum, EPPOSI, European Cancer Leagues, European Public Health Alliance
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Table 7.1 Priority areas for cancer research coordination
Area of cancer research % of
respondents Clinical trials aiming at personalised cancer
medicine 52 - Prospective clinical - Early clinical trials for
new diagnostic meth-ods and treatments Cancer genetics, epigenetics and genomic
instability 52
Biomarker development 52
Personalised medicine (mechanism-driven and molecular target oriented) for early detection and treatment
50
Gaps in clinical research 50
Gaps in basic research 49
Improving links in the research and innovation
chain 48
Infrastructures 47
Omics and bioinformatics 46
Tumour micro-environment 46
Advanced clinical trials structures adapted to biologically driven clinical trials 45
Technology Platforms 45
Invasion and metastasis 45
Novel drugs and diagnostic developments 44
Screening 43
Cancer epidemiology 43 - Incidence
- Mortality - Survival
Outcome of cancer treatment 42