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Shaping science policy in Europe.

ABSTRACT: The Lisbon Strategy was adopted by the Heads of State and Government of the European Union (EU) in 2000. By moving science into a central position for the development of a European knowledge-based economy and society, its adoption at political level seems to have been a powerful catalyst for the increased involvement of scientists in science policy in the EU. Recognising the need for scientists to act collectively in order to contribute to shape the future of science policy in Europe, a pioneering group of European science organisations leaders and representatives, as well as other scientists, initiated a European, interdisciplinary, inclusive movement leading to the creation of the European Research Council (ERC) to support basic research of the highest quality. Having scientists' campaign for the funding of bottom-up research by the EU Framework Programmes exclusively on scientific grounds, and for an ERC, was a unique event in the recent history of European science policy. For the first time, the scientific community acted collectively and across disciplinary or national boundaries as a political actor for the sake of a better science policy for Europe. As is often the case when first-hand experience is gained through the creation of a new organization, novel forms of collaboration arise. The European biomedical community has recently proposed the creation of a strategic action plan for health research (the European Council of Health Research; EuCHR), provisionally translated at present into a Scientific Panel for Health (SPH) research in Horizon 2020, the EU's research-funding programme for the period 2014-2020. The creation of such Scientific Panel should be viewed as an important contribution by the biomedical community as a major political agreement has been reached on the need for a comprehensive and long-term scientific strategy to accelerate research and facilitate innovation at EU level. It is our belief that describing and analyzing the process leading to the creation of the ERC and SPH (2002-2014) should be widely shared with the research community in general, as this may contribute to the understanding of the evolving relations between scientists and science-policy making.

SUBMITTER: Celis JE

PROVIDER: S-EPMC5528628 | biostudies-other | 2014 May

REPOSITORIES: biostudies-other

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Project description:BackgroundMajor haemoglobinopathies (MH), such as thalassaemia syndromes (Thal) and sickle cell disorders (SCD), are genetic defects associated with chronic anaemia and other complications. In Europe, MH are rare diseases (RD) but their prevalence is significantly growing in many countries due to mobility and migration flows. This creates a growing health problem in the EU that has not yet been effectively addressed by Member States (MS) authorities. The present study has been conducted with the aim of: (i) providing an overview of policies for MH in 10 EU member states (MS) (ii) analysing the challenges linked to these RD due to growing requirements imposed by population, mobility and migration trends and (iii) identifying gaps, proposing improvements on existing policies, or developing new ones to fit the identified needs.MethodsThe study has been undertaken by a group of members of the European Network for Rare and Congenital Anaemias (ENERCA) and the Thalassaemia International Federation (TIF), in collaboration with the public affairs firm Burson-Marsteller Brussels. Data from 10 EU countries have been gathered using targeted desk research and one-to-one interviews with local stakeholders, including healthcare professionals, patients and public health officers/providers.Results1. MH are the most common RD in all the 10 countries, 2. Data on prevalence, overall burden, trends, and clinical follow up costs are lacking in most countries. 3. Neonatal screening practices show a wide variation across and within countries. 4. Awareness on MH and their related complications is very low, exception made of Italy, Greece, Cyprus and UK, 5. No disaggregated data is available to understand the impact of mobility and migration on the prevalence of haemoglobinopathies, and how healthcare delivery systems should adapt to respond to this situation. 6. Targeted policy measures and/or actions are generally lacking and/or delayed.ConclusionsTen policy recommendations have been drawn from this study, building on 2006 WHO recommendations for MH to include haemoglobinopathies in National Plans of Actions for Rare Diseases.

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Shaping science policy in Europe.

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