Final Report Summary - EUSANH-ISA (Improving science advice for health in Europe, EUSANH)
Executive summary:
The European science advisory network for health (EUSANH) is a collaborative network of science advisory bodies (SABs) within the European Union (EU). Scientific advice on health is defined as the solicited or unsolicited analysis of a defined public health, health care or health policy problem, based on updated scientific knowledge, considering also relevant expert judgment, practical experience and ethical, cultural and societal values and implications, with conclusions and recommendations for health policy.
EUSANH's, first project, EUSANH-ISA, aims to improve the quality, effectiveness and efficiency of science advice for health across Europe. To achieve this goal, we described the current performance and practices in EUSANH member countries, developed a common 'best practice' methodology for science advice, established a communication and collaboration structure for the expanding and sustainable network and finally tested the common methodology and functionality of the network by developing a case study for a European science advisory report. In addition, a second report has been prepared.
Survey results of the advisory processes and practices of 19 science advisory bodies for health in 12 European countries was the first step in establishing a common framework for scientific advice across Europe. As a second step, policy makers and science advisors in ten countries were interviewed on the process and the barriers and opportunities involved with science advice.
Both these survey results provided common ground to further develop a common methodological framework which is key to provide the best possible science advice, in terms of both the quality and credibility of reports. EUSANH has drawn up a dynamic framework for producing, reviewing, disseminating and evaluating science advisory reports on health. We have identified seven stages involved with creating science advice and have summarised principles for each stage.
A first European science advice (case study) was prepared using the communication and collaboration structure and the common methodological framework. We consulted experts and stakeholders to select the topic: determinants of a successful implementation of population-based cancer screening programmes and established an expert committee. This committee included professionals from different European countries - both old and new European Union member states and different areas of expertise. The committee added their professional experience and expert judgment to the existing evidence at a two-day workshop in Sweden. Representatives from the European Commission, the European Cancer Patient Coalition and World Health Organisation (WHO) Europe were present as observers. By the end of the meeting, two documents had been drafted and the experts had been assigned to complete them and circulate them for comments. The science advisory report was delivered to the European Commission and to the Ministers of Health in the EU member states and published in a scientific journal.
Another EUSANH science advisory report on childhood leukaemia is also being prepared.
Members have been discussing a sustained communication and collaboration structure for EUSANH to strengthen the network also beyond the project's time frame. This will enable members to effectively use the common methodological framework, work in expert teams and use the Sinapse e-communication system. A plan for the sustainable EUSANH organisation has been prepared and a formal new EUSANH organisation with SABs from more than half of the European member states was launched in Bucharest.
During and after the project, continuous dissemination activities, focussing on exchange and collaboration between science advisory bodies (EUSANH members), policy-makers and relevant stakeholders and target groups took and will be taking place. These include bilateral collaborations in preparing science advice, support to Joint Actions and Joint Programming Initiatives, operationalisation of a new definition of health, distributing newsletters, giving presentations and workshops at European Public Health conferences.
Project context and objectives
President Louise Gunning on the advantages of European cooperation
'A European network strengthens national advice'
Avoiding duplication of work, learning from each other and having access to experts from all over Europe. These are important advantages of a European network for science advice on health issues in the public domain. The quality of national recommendations will improve, says Louise Gunning, current president of EUSANH and president Health Council of the Netherlands.
Across Europe, governments want to base policies addressing complex issues on scientific evidence. States often face similar issues, for instance around vaccination, chemicals in the workplace, exposure to substances in the environment, nutrition or new technology in healthcare. All advisory bodies in Europe map the state of science for governments in order to advise on public programmes'.
By collaborating, sharing knowledge and expertise, advisory bodies can do more with fewer people. Gunning gives an example: 'Take the consequences of exposure to chemicals in the workplace. You can agree that one advisory body examines substance x and another analyses substance y. Then you might examine sixty percent more substances using the same people.'
Sharing results
Cooperation within EUSANH focuses on the work preceding the publication of advice. It is about bringing together the scientific literature and interpreting and evaluating it. Based on this collaborative science base, the members themselves advise their governments. Gunning: 'By working together, we strengthen national advice. Although all advisory bodies will rely on the same research, the recommendations they deliver to their governments may differ. This is logical, not every country can or will spend the same on health care or have the same priorities.'
Moreover, the members of the network themselves determine how intensively they cooperate, emphasises Gunning. 'They can choose to use each other's reports. In any case, it is important that the advisory bodies in Europe are aware of each other's work and have access to published advice. And that means, for example, that it also has to be available in translation.'
Valorisation in the public domain
EUSANH may also contribute to the valorisation of research in the public domain, Gunning expects. 'We finance a lot of health research from public funds, both nationally and through the EU. Some of those results are converted into products by companies, which is what we call valorisation. But much of the research will be translated into public programmes. This is also a form of valorisation. For this, EUSANH is a logical partner for Europe.'
To date, requests for advice have come from national governments. But it is expected that at a later stage the EU will also request advice. Gunning: 'Responsibility for health policy now rests largely with the member states. In many countries the advisory role is legally assigned to a national organisation. So a lot needs to happen before EUSANH can release European recommendations. But a number of issues will also play out at the European level. From the perspective of a national advisory body, it is therefore important that the experts we rely on sometimes join European commissions'.
Sharing expertise
A major benefit of collaboration is that members have access to experts from across Europe. 'It could be that you really have no one at home who is an expert on a particular subject. Then you can add an English person and a Swiss person to the committee if that is where the real expertise lies. And if you have an expert, you can share that expertise with European colleagues. The fact that you have a network of like-minded members and can get to know each other, means that you can learn from each other.'
Gunning is not afraid of rivalry. 'Scientists have long been very international. They compete with each other for grants, review one another's articles for journals and meet each other at conferences. And if there are competing views, that can be only a good thing. At the health council, we always try to include conflicting scientific opinions in committees. The evaluation of research is never unequivocal. You want different viewpoints represented. If you do that on a European level, you will most likely get more specific expertise and at the same time cover all perspectives and angles.'
Quality seal
Meanwhile, the network has developed a common methodology, which has been tested using a case study. Gunning: 'If you each take on a share of the work, you want to be sure that the other parties are conducting their share in the same way. The more you follow the same approach, the easier and more meaningful collaboration becomes.'
The aim is for EUSANH to develop into a name that stands for quality. As example, Gunning refers to the renowned Cochrane Collaboration: 'Cochrane analyses are widely accepted by doctors as the basis of their medical practice. Through this network, a great many doctors have easy access to the latest scientific information.'
The Institute of Medicine in the United States of America (USA) is also a source of inspiration. 'EUSANH has the potential to be as influential. The number of experts that the USA is able to consult is a multiple of that of the Netherlands or any other EU member state. They can simply draw from a much larger pool of experts. With a European network we also have that advantage.'
The successful performance of the EUSANH-ISA project will further intensify European collaboration of SABs to strengthen national advice. EUSANH received European funding in the Seventh Framework Programme (FP7) of Directorate General (DG) Research for a three year project (from 1 February 2009 to 31 January 2012) entitled: 'Improving science advice for health in Europe', EUSANH, abbreviated EUSANH-ISA.
The general objective of this project was to improve the quality, effectiveness and efficiency of science advice for health across Europe. This objective has been translated into the following specific objectives and work packages (WPs) that were performed successfully:
1. Describe the functions and structure of existing national science advisory bodies for health in participating European countries and carry out a thematic analysis of reports from each country
2. Establish a common European 'best practice' methodology for science advice
3. Develop a plan for communication and cooperation in the expanding network of science advisory bodies, taking advantage of the Sinapse electronic communication system
4. Illustrate the proposed common methodology and the functioning of the network by developing a case study for a European science advisory report
5. Disseminate the results of the project during and at the end of the project.
Project Results:
This chapter provides synopses of the results of the WPs, followed by a view to extending the EUSANH project beyond the three year period and carrying European science advice on health into the future.
Current processes and practices
In a world increasingly focused on progress, scientific advice is becoming more central to the development of social policies. Scientific progress has itself created the need to improve the effectiveness of policy interventions. In this context, the role of science advice in supporting knowledge transfer between science and policy seems to be crucial. A good science advisory report is the best guarantee for combining 'the needs of society', 'the results of science' and 'the policy-making process' to facilitate balanced, evidence-based action.
In order to assess how to improve science advice on health across Europe it was first necessary to understand the existing state of affairs within member countries. The first objective was therefore to describe the functions and structure of existing SABs for health in participating European countries and to carry out a thematic analysis of science advisory reports (SARs) from each country.
National SABs
Firstly, it was important to understand the current characteristics and practices of national SABs in areas which are essential to science advice such as mission, legal status, structure, budget, independence, accountability, policy context, stakeholder involvement and peer review.
To do this, a questionnaire-based survey was conducted on the features and performance of national SABs. The survey contained questions about the meaning, definition and role of science advice, as well as the role of the existing SABs in policy making. It was distributed among twenty SABs across the EUSANH member states. Nineteen completed surveys were returned.
The results of the survey highlight the following aspects:
1. Science advice in permanent bodies is highly professionalised in the investigated member states. Most countries have specific institutions which provide science advice as their main function, while others have institutions that combine science advice with other tasks.
2. Science advisory bodies are generally public structures, funded mainly out of public budgets and are therefore to some extent dependent on policy makers. However, the relationship of SABs to health policy makers varies among countries, as does the participation of policy makers in the process of science advice. If we assume that the relationship between policy makers and SABs has to respect the SABs? independence and at the same time help to identify the policy problem to be addressed, there is room for improvement in this relationship in many cases.
3. At the other end of the science advisory process, dissemination of science advice results and uptake by the policy making process also varies greatly. This diversity provides an opportunity to create some general guidelines on the relationship between policy making and science. Some science advisors expressed concerns about the stability of SABs in the face of the economic crisis. Therefore, the potential efficiencies coming out of collaboration between SABs in member states offers a real opportunity for improvement.
National SARs
Secondly, it was necessary to discover how science advice is currently produced in member countries and to create a profile of science advisory reports.
The study focused on the thematic analysis of 51 SARs published by EUSANH members over the past four years. Topics of the SARs were categorised in one of the following major themes: identifying health determinants; preventing disease or promoting health; health care; and health policies and systems. Based on the analysis we extrapolated the main methodological issues involved in science advice and assessed the European relevance of SARs issued by EUSANH member organisations.
In brief, the study yielded the following results:
1. The thematic analysis reveals that advisory bodies of EUSANH member countries produce very different types of reports ranging from research assessment to policy papers and from topics of local interest to international perspectives on the health problems approached.
2. The study also revealed wide variation between national SARs in respect of the following methodological issues: formulating the question; producing science advice (including committee formation, sources of information, methodology for analysis, aspects considered in the report, reviewing the science advice and drafting the report); and publishing and disseminating the SAR.
3. Although there appears to be no European standard for producing a typical science advisory report, the study did suggest some general patterns ('different archetypes') of science advice practice. These archetypes depend on the topic addressed and on methodological traditions in producing SARs. 'Health care' is the most common topic and 'health policy problems' is the least frequently addressed. The issues encountered most often in the analysis were related to the quality and availability of health services; inequalities and inequities in health; nutrition; health and environment; screening programmes; mandatory vaccination; mental illness; and cancer.
4. It seems to be difficult to define a successful or influential SAR. The effectiveness of SARs in the policy making process is influenced by many factors of which three were identified as key: the scientific quality of the report; the topic addressed; and the interest of the appropriate policy makers regarding the advisory topic. With respect to the efficacy of the dissemination of SARs, timing and language are key elements, as are the format in which advisory text is circulated and the channels of dissemination.
5. In terms of relevance for EU policy making, EUSANH topics partly overlap with current European concerns. Therefore, EUSANH could play a role in supporting policy making at a European level for those health issues helped by science advice. There are three areas where EUSANH expertise is available and which match central concerns at the EU level: health topics addressed in more than one member state; transnational health issues where the EU has a responsibility; and health problems needing large international participation where Europe has to be represented.
Opportunities for improvement
The results show that there are specific topics for each EUSANH member, but also common themes between countries. This points to a great opportunity for collaborative work that would improve not only quality (by recruiting the best available expertise and operating within European standards) but also efficiency (by distributing the cost amongst a number of SABs) in producing SARs.
The variations between SARs also offer important opportunities. The methodological variation could allow member organisations to learn from one another. Different methods might be found to be mutually complementary depending on the working programmes and the topics covered. As no practice is perfect, we have to start from the assumption that each practice could be improved. The diversity could therefore enable the members to use each other's work and expertise.
Crucially, our results show, moreover, that a common methodological framework would be key to optimising science advice in support of the decision making process. This would not only promote quality, but also the mutual credibility and international exchange of reports from different member states. As the common methodological approach is refined further and a more intense European cooperation is achieved, EUSANH members might be able to share the initial work of synthesising the scientific evidence necessary for a SAR. Given national budget constraints, they might then together be able to cover more topics than each national organisation could cover by itself.
A framework for science advice on health: Principles and guidelines
Opinion of policy makers and science advisory bodies on science advice
Research is just one among other factors influencing and competing in the decision making process. The existence of the 'Two Communities' represents a difficulty for the use of science in policy making. The vast majority of the literature of research use is largely written from the perspective of research rather than policy and emphasises mechanisms for promoting the use of research, more than describing how research is used at the policy level. The objective of this part of work is to know the opinion of the policy-makers (PM) and SABs about the science advice in health in Europe.
Two questionnaires were designed targeting both PM involved in developing health policy as government ministers, officials and senior public servants within national and/or local health service and individuals with enough experience in a SAB.
Nineteen PM and 25 SAB staff responded the questionnaire. Factors that are seen as barriers for the relationship between PM and SAB are the differences in timing and interest and the difficulties to translate policy problems into research questions. Communication between PM and SAB was rated as regular by PM and as occasionally by SAB. PM considered that most of the communication was informal. Both PM and SAB considered that usefulness of science advice (SA) could be improved with more clarity, brevity, simplicity and succinct and concise reporting. Transparency (clear, open and accessible information), independency, procedures to adequately deal with conflict of interest, rigor and systematisation of knowledge are factors that both PM and SAB ranked with highest value.
Key principles
EUSANH aims to improve the quality of science advice of the participating science advisory bodies from across Europe. A common methodological framework will be critical to providing the best possible science advice, in terms of both the quality and credibility of reports.
1. Framing the issue. Policy makers and science advisors should regularly discuss emerging issues requiring advice. In formulating a request for advice, policy makers and science advisors should determine in close cooperation the set of questions to be addressed. In doing so, they should consider whether a European or international perspective is appropriate. The health research community can be involved in the process from the outset.
2. Planning the process. When planning the process, it is important that policy makers and science advisors take into consideration the stage within the policy making process at which the scientific advice is needed. Policy makers and scientists tend to have different points of departure and reference and work to different time frames. It is up to them to link their two worlds. Once the scope and duration of the task have been agreed upon, the science advisory body should develop operational procedures to manage the entire advisory process.
3. Drafting the advisory report. To ensure credibility, committee members should be selected on the basis of professional excellence and appropriate range of expertise and should reflect the diversity of scientific opinions. To guarantee independence from political, economic and special interest influence, invited experts should be screened for conflicts of interest. Furthermore, committee members should carry out their deliberations in closed meetings in order to avoid political and special interest influence. The committee should be accountable for the final report. Depending on the issue, policy makers could be involved as official observers in the committee or stakeholder hearings could be held. This may increase support for the final recommendation. In order to ensure scientific transparency, data sources such as existing systematic reviews and HTA reports used in producing the report should be specified. All assumptions made in interpreting and synthesising the data should be documented and explained and uncertainties described.
4. Formulating the recommendations. The success of science advice depends on its clarity, feasibility and applicability to a particular issue. It is important for advisory bodies to have good knowledge of the political climate. Clear language should be used in the report, which ought to address the whole issue. Any ethical or legal principles should be specified. Sometimes it is better not to formulate recommendations but to provide policy options.
5. Reviewing the report. The report should undergo an independent peer review. This should help to guarantee continuity in producing advisory reports on similar issues and secure consistency with other reports of the advisory body. The authors of the report are then to address the comments and suggestions which arise. An editorial process should be established to resolve disagreements. Member states may provide their own systems to test the quality of advice given by a national standing committee. When the European Union is the client, experts from different countries will be asked to take another critical look at conclusions and recommendations. Eventually, a European audit committee could be established.
6. Publishing the report. The finalised peer reviewed report should be made publicly available. This includes providing the report to the policy maker and to the health research community. Where more active dissemination is required, press releases, press statements, press briefings and scientific publications may be considered. Meetings with policy makers and target groups can be organised to provide more clarification. Preferably, the (summarised) report should be available in English.
7. Assessing the impact. Given that science is only one of the elements that can influence policy making, it would not be appropriate to assume a direct relationship between science advice and policy. However, if science advice is correctly positioned within the decision making process, it will be taken into account. There should therefore be a follow-up procedure to monitor policy decisions in response to the advisory report. In addition, since accountability is an essential part of public service, the advisory body should regularly perform a (self) assessment, in terms of both the impact of its reports and its performance.
Building a sustainable structure
In January 2012, the EUSANH-ISA project will come to an end and EUSANH will be fully independent. To continue to be successful, it is essential to put in place a sustainable European structure of cooperation. Below is an overview of our vision for a sustainable EUSANH structure.
A three-step process.
Stage one: short term, 2012 to 2016. The initial stage will aim to show that cooperating within the EUSANH network saves work whilst simultaneously facilitating better quality science advisory reports and to expand the network. At this stage, cooperation will be essentially bottom-up. By bottom-up cooperation we mean all forms of cooperation in which two or more SABs have decided to engage.
Stage two: medium term, 2016 to 2019. At this stage, we will start focussing on enhancing the quality of our advisory reports. By the end of this period, the European advisory and political community will be familiar with the EUSANH and a EUSANH advisory report will be synonymous with quality.
Stage three: long term, 2019 to 2022. By the third stage, the EUSANH will be looked upon as a reputable network by the European Commission. All but a few European SABs will have joined. The network will be frequently called upon to issue SARs at both the national and the European level. This phase will therefore involve top-down cooperation, meaning cooperation between two or more SABs on an initiative which has been requested by a European or other authority.
The advantages of cooperation
National SABs have a lot to gain from bottom-up collaboration within the network. They can:
1. Access the best experts at a European level ('golden network')
2. Stay informed about SARs on important health matters issued by partner and request information from each other on urgent advisory reports
3. Collaborate when preparing the science base for advisory reports to avoid overlap and duplicate activities and thereby reduce the workload
4. Support valorisation of research in the public domain (e.g. joint programming initiatives)
5. Increase the credibility of their advisory reports
6. Learn from the work of other SABs and public health experts and exchange staff members
7. Have one point of contact for the European Commission
8. Access to the annual EUSANH conference and website (members' work programmes and advisory reports).
There are also advantages to top-down cooperation. The EUSANH network is a point of contact for the European authorities. This makes it possible to compete for European assignments from DG Sanco or DG Research and perhaps also for assignments from European agencies such as European Food Safety Authority (EFSA) and European Centre for Disease Prevention and Control (ECDC). The broad range of topics that are handled by member SABs enables the EUSANH to offer its services in a wide variety of fields.
Issuing advisory reports at the European level adds to the recognition of the network, thereby increasing the value of its advisory reports. Such assignments make it possible to obtain funding, which can in turn contribute to the reduction of the cost of the secretariat.
Policy makers also benefit from cooperation, being able to make use of the EUSANH's high quality SARs as a foundation for evidence-based decision making. In addition, policy makers can add health topics for SARs and help to identify knowledge gaps that will lead to new priority health research programmes. This is not only true at the national level, but also at the multinational and European levels.
Cooperation structure
We propose the following aspects of a cooperation structure:
1. SAB commitment: the most important components of a sustainable structure are the members of SABs and their willingness to cooperate.
2. The EUSANH network: the best way to facilitate cooperation is via a network with a structure, a methodological framework, agreements, annual meetings, a website, a board and a secretariat.
3. Expert groups: if two or more EUSANH member organisations from different countries decide to cooperate on the preparation of a SAR on health, they may form an expert group. This could be on the members? own initiative (bottom-up) or upon request by a third party (top-down). In both cases the SABs form the link between the experts and the expert groups and are therefore in charge of finding the right expertise and providing financial and administrative support to the experts.
4. Secretariat: a fixed secretariat which supports the running of the network is essential. It will coordinate communication within the network, monitor the budget, serve as a point of contact for third party SAR requests, support expert groups, organise the annual meeting and assist the executive board. The secretariat is to be integrated into one of the member SABs.
5. Audit committee: an audit committee will be set up during stage two of the establishment of EUSANH, to ensure the quality of SARs.
6. Methodological framework: it is crucial to have a rigorous common methodology for producing science advice. See the previous section for a summary of the proposed approach.
7. Annual meeting: the EUSANH organises an annual meeting, which aims, amongst other things, to strengthen relations between SABs, take important joint decisions, review advisory reports and exchange ideas with the USA Institute of Medicine (IOM).
Management structure
Organisational structure
The governing council is the governing body of EUSANH. Normally the council meets once a year. Each member has a representative in the governing council. The president of the council is the president of EUSANH and also the president of the executive board. The executive board is made up of five members from different member organisations and is responsible for the overall direction and management of the interests of EUSANH. EUSANH's structure will further include a secretariat to support the day-to-day running of the network, expert groups formed to prepare joint science advisory reports and (in time) an audit committee to ensure the quality of advisory reports. The secretariat will be hosted by one of the participating bodies.
Communication structure
The following is an outline of the main communication channels to be used by EUSANH members. As a rule, the working language is English. The exception is in instances in which two or more SABs decide to work on a bottom-up advisory report in a different, common, language. In these cases there should be an English translation.
Internal communication channels for the EUSANH network
1. E-community: the members-only part of the e-communication system is the linchpin for communication between members of the network.
2. E-meetings: for the executive board and expert groups.
3. Face to face meetings: will be necessary from time to time, for expert groups to get to know each other.
4. Annual meeting: this is an important fixed event for the network as a whole.
5. Email and telephone: remain important means of communicating from a distance.
External communication channels for the EUSANH network
1. Website: the EUSANH website (http://www.eusanh.eu) is a central communication platform not only for members but also for external stakeholders and the general public.
2. EUSANH newsletter: the secretariat prepares a quarterly newsletter and distributes it to all EUSANH members, advisors, relevant stakeholders and public groups.
3. E-community: an electronic communication system was set up to provide a library of scientific opinions and advisory reports. SABs should place issued advisory reports on the e-community. Further, the discussion and survey tools can be used for transnational debate with experts, citizens and policy makers.
Financial framework
Annual membership fees
The EUSANH needs to become independent from European funding and should be able to function on the basis of contributions paid by its members. We need EUR 50 000 a year for administrative costs plus additional activities such as annual meetings and e-meetings. The governing council decides on the manner in which the fee is calculated. The SAB which accommodates the secretariat and thus already carries a significant part of the expenses is exonerated from paying the membership fee.
Expert group budget for bottom-up advisory reports
Expert groups and their SABs are responsible for their own budget. They can seek financial support from their organisations or ministries of health and can accept appropriate donations and grants from EU institutions, governments, international non-profit organisations and partner organisations.
Top-down advisory reports
Organisations which request the network's advice shall pay for this service. The network can also sign up for European programmes for which grants are awarded.
Legal aspects
The future EUSANH network will have to determine whether it should be established as a legal entity, taking into consideration the national legal acts that create SABs, as well as questions of liability and official commitments, use of time and budget and the legal status of the experts within the expert groups. Possibilities for becoming a legal entity include an international non-profit organisation or a de facto partnership. Options should be thoroughly looked into by founding members.
New EUSANH organisation
To formally launch the (sustainable structure of) new EUSANH organisation, a founding meeting took place in Bucharest on 13 and 14 October 2011. Presidents of 17 science advisory bodies from more than half of the European member states became 'founding members' of the new EUSANH organisation. These members convened in the first meeting of the governing council and agreed on the constitution and on membership. On that occasion, the first 'EUSANH president's dinner' was also launched: a yearly occasion to meet and discuss the most challenging health issues the member states are confronting.
A case study: Determinants of a successful implementation of population-based cancer screening programmes
This section summarises the conducting and outcomes of a pilot European advisory report to illustrate and test the common methodology that was implemented.
The objective of the pilot case study was to report on the processes and procedures needed for a successful implementation of population-based screening programmes for cervical, breast and colorectal cancer.
Background
The uptake and practices of cancer screening programmes have been studied in recent reports, showing substantial variation between European countries. Detailed EU guidelines for cancer screening programmes do exist. In December 2003, the Council of the European Union stated that evidence exists concerning the efficacy of screening for breast, colorectal and cervical cancer. It also stated that before decisions can be made on the implementation of screening programmes ethical, legal, social, medical, organisational and economic aspects have to be considered.
However, existing guidelines are not always implemented. There is therefore an additional need for knowledge and recommendations addressing policy makers about critical factors for successful cancer screening implementation.
Framing the question
What are the important organisational aspects when implementing cancer screening programmes? How can barriers to participation in organised screening programmes be reduced? What advice can be given to decision makers in a European country wanting to initiate a cancer screening programme?
It is important for the SAR to be relevant for any European country, regardless of the present organisation of their health care system or if an organised cancer screening programme is already existing or planned. This report is addressed to the Minister of Health in a European country. It therefore focuses on general aspects and success factors that can be extrapolated from one cancer screening programme to another. The purpose is to facilitate decision making in a region or country where there is a will to initiate or improve the implementation of a cancer screening programme.
Advice to the minister
Any decision to implement a cancer screening programme should take into account existing EU recommendations and guidelines such as the Recommendation on Cancer Screening of 2 December 2003 issued by the Council of the EU; the European Guidelines on quality assurance in breast, cervical and colorectal cancer screening; and recent reports on the implementation of cancer screening programmes in the EU. These references recognise that societal values in addition to professional, technical and scientific standards are of prime importance in any decision to implement cancer screening programmes. Furthermore, there is no doubt that a population-based approach to programme implementation as recommended by the Council of the EU and the European Guidelines is more equitable, more effective and more cost-effective than an opportunistic approach.
Experience in Europe shows that successful implementation of population-based cancer screening programmes requires long term political commitment, a comprehensive quality management programme and sustainable resources. In a fully established programme the proportion of the expenditure devoted to quality assurance should be no less than 10 to 20 %, depending on the scale of the programme.
Once the political decision has been taken to establish a population-based cancer screening programme, a competent programme coordinator should receive the mandate to manage the entire implementation process, beginning with a planning phase and followed by feasibility testing, piloting and, depending on the interim results, the subsequent gradual rollout of the programme. Relevant existing expertise in Europe should be available through the European cancer screening networks and the European Guidelines development activities, coordinated by the International Agency for Research on Cancer (IARC) and related initiatives such as the European Partnership for Action Against Cancer (EPAAC).
Additional systems are necessary to adequately monitor and evaluate the quality and outcome of the screening programme, including linkage of individual data on cancer occurrence and morbidity, screening history, diagnosis, treatment and vital statistics. Furthermore, key performance and quality indicators of the screening process must be recorded and monitored and the results must be analysed and used for quality management processes. Monitoring and evaluation reports must be published regularly to inform the public and decision makers and to permit timely modification of programme policy if necessary. The experience of EUSANH in developing advice for health policy making, taking into account not only scientific and professional but also societal aspects, could play an important role in this regard in the future.
Methodology
The science advice revolved around a workshop in Stockholm, Sweden, from 7 to 9 February 2011. Representatives from the European Commission, the European Cancer Patient Coalition and WHO Europe were present as observers.
Using available evidence
Background material was produced prior to the meeting of the expert group, including an overview of reports on participation rates and informed decision making and a literature review of organisational and economic aspects of cancer screening.
Expert judgment
An expert committee was established, made up of professionals from different European countries. Several of the experts have many years' experience in working with related questions on a European level and have previously been involved in writing European guidelines on cancer screening. The areas of expertise covered by the committee included cancer epidemiology; health care systems; implementation; policy barriers; oncology; health economics; and medical ethics.
The assignment was to complete the literature review produced for the workshop in Stockholm by adding conclusions and recommendations.
The workshop started out with scientific presentations by participants, illustrating key issues regarding cancer screening implementation in Europe. The presentations were followed by a general introduction to the purpose of the workshop, including an explanation of the principles and guidelines for enhancing the quality and efficiency of science advice. The committee was officially installed by a round in which the experts presented potential conflicts of interest. No conflicts of interest were found.
Discussion in expert group
The committee was divided into two working groups: one with the initial assignment to complete the background document on participation rates and informed decision making and the other with the task of discussing organisational issues.
One of the groups concluded the first day that providing recommendations on determinants is a prerequisite for organising population-based screening. Therefore they suggested drafting a document on the general topic determinants of a successful implementation of population-based cancer screening programmes? with important points that should be considered when implementing a cancer screening programme. This idea was presented to the entire expert committee and resulted in a deeper discussion on results. The conclusion was that the results should not duplicate the present European Community (EC) guidelines, but rather be a guide for policy makers for decisions pertaining to implementation.
It was also agreed that a statement should be written, supported by the detailed document. The statement should exceed the evidence-base and also include the expert judgment of the committee. The experts could now choose which document to work on and were again divided into two groups. By the end of the meeting the two documents had been drafted and experts had been assigned to complete them and circulate them for comments.
Evaluation of the advisory process
1. The expert committee highly appreciated the evidence-based approach and valued the prepared background material distributed before the meeting.
2. The chair persons played an important role in the whole workshop process. As there were many different expectations about the meeting the chairs were also needed to help focus the discussion.
3. There are clear advantages of science advice on a European level based on work of a European expert group. It is high time to move forward with European collaboration on science advice on health.
A EUSANH science advisory report on childhood leukaemia
To have an additional test of the common methodology set out in section II, a second EUSANH science advisory report has been prepared during the project period. It is the so called bottom-up collaboration between the Dutch and Belgian Health Councils on the topic childhood leukaemia and environmental factors. All EUSANH member experts will have the opportunity to peer review the draft and EUSANH members can use the science advice in their country. Although still lessons (such as fewer but longer f2f meetings, more time in between f2f meetings) can be learned, the advantages of cooperation are evident.
Potential impact:
Exchanging knowledge, expertise and work programmes
We expect that exchanging and sharing knowledge, expertise and work programmes and collaborative work on common and transnational health issues, will help to produce better quality science advisory reports more efficiently by the participants in the individual Member States. The consensus formation on preferred practices and quality standards that have been developed in the methodological framework and the published science advice (International Journal Cancer) will help to achieve this. All information at the EUSANH website and e-community will at the same time promote open access to the core issues in using scientific knowledge for decision-making.
Overlapping topics from EUSANH members' work programmes 2011 included vaccination (influenza, national vaccination programmes); mental health and psychosocial factors (psychotropic medicine, Psychosis/schizophrenia, depression, autism spectrum disorders), violence against children, health technology assessment (HTA) for dental health; environmental health (childhood leukaemia). As mentioned above the collaboration on childhood leukaemia has started and is in its final phase.
EUSANH future activities
The (new) EUSANH executive board is convinced that joint actions (JA) could benefit from an independent base-line report on the state of knowledge. Therefore, we contacted the JA 'human immunodeficiency virus (HIV) prevention' and 'mental health and well being' to discuss this. At least for the JA HIV prevention, EUSANH will be a collaborating partner. Further, EUSANH is willing to work on a new operationalisation of the definition of health in follow-up of the British Medical Journal (BMJ) discussion (July 2011). EUSANH considers this topic of utmost importance for the European Commission also in relation to the European Innovation Partnership in the field of active and healthy ageing.
Recently, EUSANH accepted the invitation to participate in the stakeholders' advisory board on the EU joint programming on a healthy diet for a healthy life. Further information can be found at 'http://www.healthydietforhealthylife.eu'.
Next EUSANH annual meeting at the European Public Health Conference
The executive board decided to have the EUSANH governing council meeting during the European Public Health Conference that would be held from 7 to 10 November 2012 in Malta. Moreover, we will opt for a EUSANH workshop on vaccination schedules in the member states.
List of websites:
'http://www.eusanh.eu'.
Contact person: Dorine Coenen d.coenen@gr.nl; eusanh@eusanh.eu.
The European science advisory network for health (EUSANH) is a collaborative network of science advisory bodies (SABs) within the European Union (EU). Scientific advice on health is defined as the solicited or unsolicited analysis of a defined public health, health care or health policy problem, based on updated scientific knowledge, considering also relevant expert judgment, practical experience and ethical, cultural and societal values and implications, with conclusions and recommendations for health policy.
EUSANH's, first project, EUSANH-ISA, aims to improve the quality, effectiveness and efficiency of science advice for health across Europe. To achieve this goal, we described the current performance and practices in EUSANH member countries, developed a common 'best practice' methodology for science advice, established a communication and collaboration structure for the expanding and sustainable network and finally tested the common methodology and functionality of the network by developing a case study for a European science advisory report. In addition, a second report has been prepared.
Survey results of the advisory processes and practices of 19 science advisory bodies for health in 12 European countries was the first step in establishing a common framework for scientific advice across Europe. As a second step, policy makers and science advisors in ten countries were interviewed on the process and the barriers and opportunities involved with science advice.
Both these survey results provided common ground to further develop a common methodological framework which is key to provide the best possible science advice, in terms of both the quality and credibility of reports. EUSANH has drawn up a dynamic framework for producing, reviewing, disseminating and evaluating science advisory reports on health. We have identified seven stages involved with creating science advice and have summarised principles for each stage.
A first European science advice (case study) was prepared using the communication and collaboration structure and the common methodological framework. We consulted experts and stakeholders to select the topic: determinants of a successful implementation of population-based cancer screening programmes and established an expert committee. This committee included professionals from different European countries - both old and new European Union member states and different areas of expertise. The committee added their professional experience and expert judgment to the existing evidence at a two-day workshop in Sweden. Representatives from the European Commission, the European Cancer Patient Coalition and World Health Organisation (WHO) Europe were present as observers. By the end of the meeting, two documents had been drafted and the experts had been assigned to complete them and circulate them for comments. The science advisory report was delivered to the European Commission and to the Ministers of Health in the EU member states and published in a scientific journal.
Another EUSANH science advisory report on childhood leukaemia is also being prepared.
Members have been discussing a sustained communication and collaboration structure for EUSANH to strengthen the network also beyond the project's time frame. This will enable members to effectively use the common methodological framework, work in expert teams and use the Sinapse e-communication system. A plan for the sustainable EUSANH organisation has been prepared and a formal new EUSANH organisation with SABs from more than half of the European member states was launched in Bucharest.
During and after the project, continuous dissemination activities, focussing on exchange and collaboration between science advisory bodies (EUSANH members), policy-makers and relevant stakeholders and target groups took and will be taking place. These include bilateral collaborations in preparing science advice, support to Joint Actions and Joint Programming Initiatives, operationalisation of a new definition of health, distributing newsletters, giving presentations and workshops at European Public Health conferences.
Project context and objectives
President Louise Gunning on the advantages of European cooperation
'A European network strengthens national advice'
Avoiding duplication of work, learning from each other and having access to experts from all over Europe. These are important advantages of a European network for science advice on health issues in the public domain. The quality of national recommendations will improve, says Louise Gunning, current president of EUSANH and president Health Council of the Netherlands.
Across Europe, governments want to base policies addressing complex issues on scientific evidence. States often face similar issues, for instance around vaccination, chemicals in the workplace, exposure to substances in the environment, nutrition or new technology in healthcare. All advisory bodies in Europe map the state of science for governments in order to advise on public programmes'.
By collaborating, sharing knowledge and expertise, advisory bodies can do more with fewer people. Gunning gives an example: 'Take the consequences of exposure to chemicals in the workplace. You can agree that one advisory body examines substance x and another analyses substance y. Then you might examine sixty percent more substances using the same people.'
Sharing results
Cooperation within EUSANH focuses on the work preceding the publication of advice. It is about bringing together the scientific literature and interpreting and evaluating it. Based on this collaborative science base, the members themselves advise their governments. Gunning: 'By working together, we strengthen national advice. Although all advisory bodies will rely on the same research, the recommendations they deliver to their governments may differ. This is logical, not every country can or will spend the same on health care or have the same priorities.'
Moreover, the members of the network themselves determine how intensively they cooperate, emphasises Gunning. 'They can choose to use each other's reports. In any case, it is important that the advisory bodies in Europe are aware of each other's work and have access to published advice. And that means, for example, that it also has to be available in translation.'
Valorisation in the public domain
EUSANH may also contribute to the valorisation of research in the public domain, Gunning expects. 'We finance a lot of health research from public funds, both nationally and through the EU. Some of those results are converted into products by companies, which is what we call valorisation. But much of the research will be translated into public programmes. This is also a form of valorisation. For this, EUSANH is a logical partner for Europe.'
To date, requests for advice have come from national governments. But it is expected that at a later stage the EU will also request advice. Gunning: 'Responsibility for health policy now rests largely with the member states. In many countries the advisory role is legally assigned to a national organisation. So a lot needs to happen before EUSANH can release European recommendations. But a number of issues will also play out at the European level. From the perspective of a national advisory body, it is therefore important that the experts we rely on sometimes join European commissions'.
Sharing expertise
A major benefit of collaboration is that members have access to experts from across Europe. 'It could be that you really have no one at home who is an expert on a particular subject. Then you can add an English person and a Swiss person to the committee if that is where the real expertise lies. And if you have an expert, you can share that expertise with European colleagues. The fact that you have a network of like-minded members and can get to know each other, means that you can learn from each other.'
Gunning is not afraid of rivalry. 'Scientists have long been very international. They compete with each other for grants, review one another's articles for journals and meet each other at conferences. And if there are competing views, that can be only a good thing. At the health council, we always try to include conflicting scientific opinions in committees. The evaluation of research is never unequivocal. You want different viewpoints represented. If you do that on a European level, you will most likely get more specific expertise and at the same time cover all perspectives and angles.'
Quality seal
Meanwhile, the network has developed a common methodology, which has been tested using a case study. Gunning: 'If you each take on a share of the work, you want to be sure that the other parties are conducting their share in the same way. The more you follow the same approach, the easier and more meaningful collaboration becomes.'
The aim is for EUSANH to develop into a name that stands for quality. As example, Gunning refers to the renowned Cochrane Collaboration: 'Cochrane analyses are widely accepted by doctors as the basis of their medical practice. Through this network, a great many doctors have easy access to the latest scientific information.'
The Institute of Medicine in the United States of America (USA) is also a source of inspiration. 'EUSANH has the potential to be as influential. The number of experts that the USA is able to consult is a multiple of that of the Netherlands or any other EU member state. They can simply draw from a much larger pool of experts. With a European network we also have that advantage.'
The successful performance of the EUSANH-ISA project will further intensify European collaboration of SABs to strengthen national advice. EUSANH received European funding in the Seventh Framework Programme (FP7) of Directorate General (DG) Research for a three year project (from 1 February 2009 to 31 January 2012) entitled: 'Improving science advice for health in Europe', EUSANH, abbreviated EUSANH-ISA.
The general objective of this project was to improve the quality, effectiveness and efficiency of science advice for health across Europe. This objective has been translated into the following specific objectives and work packages (WPs) that were performed successfully:
1. Describe the functions and structure of existing national science advisory bodies for health in participating European countries and carry out a thematic analysis of reports from each country
2. Establish a common European 'best practice' methodology for science advice
3. Develop a plan for communication and cooperation in the expanding network of science advisory bodies, taking advantage of the Sinapse electronic communication system
4. Illustrate the proposed common methodology and the functioning of the network by developing a case study for a European science advisory report
5. Disseminate the results of the project during and at the end of the project.
Project Results:
This chapter provides synopses of the results of the WPs, followed by a view to extending the EUSANH project beyond the three year period and carrying European science advice on health into the future.
Current processes and practices
In a world increasingly focused on progress, scientific advice is becoming more central to the development of social policies. Scientific progress has itself created the need to improve the effectiveness of policy interventions. In this context, the role of science advice in supporting knowledge transfer between science and policy seems to be crucial. A good science advisory report is the best guarantee for combining 'the needs of society', 'the results of science' and 'the policy-making process' to facilitate balanced, evidence-based action.
In order to assess how to improve science advice on health across Europe it was first necessary to understand the existing state of affairs within member countries. The first objective was therefore to describe the functions and structure of existing SABs for health in participating European countries and to carry out a thematic analysis of science advisory reports (SARs) from each country.
National SABs
Firstly, it was important to understand the current characteristics and practices of national SABs in areas which are essential to science advice such as mission, legal status, structure, budget, independence, accountability, policy context, stakeholder involvement and peer review.
To do this, a questionnaire-based survey was conducted on the features and performance of national SABs. The survey contained questions about the meaning, definition and role of science advice, as well as the role of the existing SABs in policy making. It was distributed among twenty SABs across the EUSANH member states. Nineteen completed surveys were returned.
The results of the survey highlight the following aspects:
1. Science advice in permanent bodies is highly professionalised in the investigated member states. Most countries have specific institutions which provide science advice as their main function, while others have institutions that combine science advice with other tasks.
2. Science advisory bodies are generally public structures, funded mainly out of public budgets and are therefore to some extent dependent on policy makers. However, the relationship of SABs to health policy makers varies among countries, as does the participation of policy makers in the process of science advice. If we assume that the relationship between policy makers and SABs has to respect the SABs? independence and at the same time help to identify the policy problem to be addressed, there is room for improvement in this relationship in many cases.
3. At the other end of the science advisory process, dissemination of science advice results and uptake by the policy making process also varies greatly. This diversity provides an opportunity to create some general guidelines on the relationship between policy making and science. Some science advisors expressed concerns about the stability of SABs in the face of the economic crisis. Therefore, the potential efficiencies coming out of collaboration between SABs in member states offers a real opportunity for improvement.
National SARs
Secondly, it was necessary to discover how science advice is currently produced in member countries and to create a profile of science advisory reports.
The study focused on the thematic analysis of 51 SARs published by EUSANH members over the past four years. Topics of the SARs were categorised in one of the following major themes: identifying health determinants; preventing disease or promoting health; health care; and health policies and systems. Based on the analysis we extrapolated the main methodological issues involved in science advice and assessed the European relevance of SARs issued by EUSANH member organisations.
In brief, the study yielded the following results:
1. The thematic analysis reveals that advisory bodies of EUSANH member countries produce very different types of reports ranging from research assessment to policy papers and from topics of local interest to international perspectives on the health problems approached.
2. The study also revealed wide variation between national SARs in respect of the following methodological issues: formulating the question; producing science advice (including committee formation, sources of information, methodology for analysis, aspects considered in the report, reviewing the science advice and drafting the report); and publishing and disseminating the SAR.
3. Although there appears to be no European standard for producing a typical science advisory report, the study did suggest some general patterns ('different archetypes') of science advice practice. These archetypes depend on the topic addressed and on methodological traditions in producing SARs. 'Health care' is the most common topic and 'health policy problems' is the least frequently addressed. The issues encountered most often in the analysis were related to the quality and availability of health services; inequalities and inequities in health; nutrition; health and environment; screening programmes; mandatory vaccination; mental illness; and cancer.
4. It seems to be difficult to define a successful or influential SAR. The effectiveness of SARs in the policy making process is influenced by many factors of which three were identified as key: the scientific quality of the report; the topic addressed; and the interest of the appropriate policy makers regarding the advisory topic. With respect to the efficacy of the dissemination of SARs, timing and language are key elements, as are the format in which advisory text is circulated and the channels of dissemination.
5. In terms of relevance for EU policy making, EUSANH topics partly overlap with current European concerns. Therefore, EUSANH could play a role in supporting policy making at a European level for those health issues helped by science advice. There are three areas where EUSANH expertise is available and which match central concerns at the EU level: health topics addressed in more than one member state; transnational health issues where the EU has a responsibility; and health problems needing large international participation where Europe has to be represented.
Opportunities for improvement
The results show that there are specific topics for each EUSANH member, but also common themes between countries. This points to a great opportunity for collaborative work that would improve not only quality (by recruiting the best available expertise and operating within European standards) but also efficiency (by distributing the cost amongst a number of SABs) in producing SARs.
The variations between SARs also offer important opportunities. The methodological variation could allow member organisations to learn from one another. Different methods might be found to be mutually complementary depending on the working programmes and the topics covered. As no practice is perfect, we have to start from the assumption that each practice could be improved. The diversity could therefore enable the members to use each other's work and expertise.
Crucially, our results show, moreover, that a common methodological framework would be key to optimising science advice in support of the decision making process. This would not only promote quality, but also the mutual credibility and international exchange of reports from different member states. As the common methodological approach is refined further and a more intense European cooperation is achieved, EUSANH members might be able to share the initial work of synthesising the scientific evidence necessary for a SAR. Given national budget constraints, they might then together be able to cover more topics than each national organisation could cover by itself.
A framework for science advice on health: Principles and guidelines
Opinion of policy makers and science advisory bodies on science advice
Research is just one among other factors influencing and competing in the decision making process. The existence of the 'Two Communities' represents a difficulty for the use of science in policy making. The vast majority of the literature of research use is largely written from the perspective of research rather than policy and emphasises mechanisms for promoting the use of research, more than describing how research is used at the policy level. The objective of this part of work is to know the opinion of the policy-makers (PM) and SABs about the science advice in health in Europe.
Two questionnaires were designed targeting both PM involved in developing health policy as government ministers, officials and senior public servants within national and/or local health service and individuals with enough experience in a SAB.
Nineteen PM and 25 SAB staff responded the questionnaire. Factors that are seen as barriers for the relationship between PM and SAB are the differences in timing and interest and the difficulties to translate policy problems into research questions. Communication between PM and SAB was rated as regular by PM and as occasionally by SAB. PM considered that most of the communication was informal. Both PM and SAB considered that usefulness of science advice (SA) could be improved with more clarity, brevity, simplicity and succinct and concise reporting. Transparency (clear, open and accessible information), independency, procedures to adequately deal with conflict of interest, rigor and systematisation of knowledge are factors that both PM and SAB ranked with highest value.
Key principles
EUSANH aims to improve the quality of science advice of the participating science advisory bodies from across Europe. A common methodological framework will be critical to providing the best possible science advice, in terms of both the quality and credibility of reports.
1. Framing the issue. Policy makers and science advisors should regularly discuss emerging issues requiring advice. In formulating a request for advice, policy makers and science advisors should determine in close cooperation the set of questions to be addressed. In doing so, they should consider whether a European or international perspective is appropriate. The health research community can be involved in the process from the outset.
2. Planning the process. When planning the process, it is important that policy makers and science advisors take into consideration the stage within the policy making process at which the scientific advice is needed. Policy makers and scientists tend to have different points of departure and reference and work to different time frames. It is up to them to link their two worlds. Once the scope and duration of the task have been agreed upon, the science advisory body should develop operational procedures to manage the entire advisory process.
3. Drafting the advisory report. To ensure credibility, committee members should be selected on the basis of professional excellence and appropriate range of expertise and should reflect the diversity of scientific opinions. To guarantee independence from political, economic and special interest influence, invited experts should be screened for conflicts of interest. Furthermore, committee members should carry out their deliberations in closed meetings in order to avoid political and special interest influence. The committee should be accountable for the final report. Depending on the issue, policy makers could be involved as official observers in the committee or stakeholder hearings could be held. This may increase support for the final recommendation. In order to ensure scientific transparency, data sources such as existing systematic reviews and HTA reports used in producing the report should be specified. All assumptions made in interpreting and synthesising the data should be documented and explained and uncertainties described.
4. Formulating the recommendations. The success of science advice depends on its clarity, feasibility and applicability to a particular issue. It is important for advisory bodies to have good knowledge of the political climate. Clear language should be used in the report, which ought to address the whole issue. Any ethical or legal principles should be specified. Sometimes it is better not to formulate recommendations but to provide policy options.
5. Reviewing the report. The report should undergo an independent peer review. This should help to guarantee continuity in producing advisory reports on similar issues and secure consistency with other reports of the advisory body. The authors of the report are then to address the comments and suggestions which arise. An editorial process should be established to resolve disagreements. Member states may provide their own systems to test the quality of advice given by a national standing committee. When the European Union is the client, experts from different countries will be asked to take another critical look at conclusions and recommendations. Eventually, a European audit committee could be established.
6. Publishing the report. The finalised peer reviewed report should be made publicly available. This includes providing the report to the policy maker and to the health research community. Where more active dissemination is required, press releases, press statements, press briefings and scientific publications may be considered. Meetings with policy makers and target groups can be organised to provide more clarification. Preferably, the (summarised) report should be available in English.
7. Assessing the impact. Given that science is only one of the elements that can influence policy making, it would not be appropriate to assume a direct relationship between science advice and policy. However, if science advice is correctly positioned within the decision making process, it will be taken into account. There should therefore be a follow-up procedure to monitor policy decisions in response to the advisory report. In addition, since accountability is an essential part of public service, the advisory body should regularly perform a (self) assessment, in terms of both the impact of its reports and its performance.
Building a sustainable structure
In January 2012, the EUSANH-ISA project will come to an end and EUSANH will be fully independent. To continue to be successful, it is essential to put in place a sustainable European structure of cooperation. Below is an overview of our vision for a sustainable EUSANH structure.
A three-step process.
Stage one: short term, 2012 to 2016. The initial stage will aim to show that cooperating within the EUSANH network saves work whilst simultaneously facilitating better quality science advisory reports and to expand the network. At this stage, cooperation will be essentially bottom-up. By bottom-up cooperation we mean all forms of cooperation in which two or more SABs have decided to engage.
Stage two: medium term, 2016 to 2019. At this stage, we will start focussing on enhancing the quality of our advisory reports. By the end of this period, the European advisory and political community will be familiar with the EUSANH and a EUSANH advisory report will be synonymous with quality.
Stage three: long term, 2019 to 2022. By the third stage, the EUSANH will be looked upon as a reputable network by the European Commission. All but a few European SABs will have joined. The network will be frequently called upon to issue SARs at both the national and the European level. This phase will therefore involve top-down cooperation, meaning cooperation between two or more SABs on an initiative which has been requested by a European or other authority.
The advantages of cooperation
National SABs have a lot to gain from bottom-up collaboration within the network. They can:
1. Access the best experts at a European level ('golden network')
2. Stay informed about SARs on important health matters issued by partner and request information from each other on urgent advisory reports
3. Collaborate when preparing the science base for advisory reports to avoid overlap and duplicate activities and thereby reduce the workload
4. Support valorisation of research in the public domain (e.g. joint programming initiatives)
5. Increase the credibility of their advisory reports
6. Learn from the work of other SABs and public health experts and exchange staff members
7. Have one point of contact for the European Commission
8. Access to the annual EUSANH conference and website (members' work programmes and advisory reports).
There are also advantages to top-down cooperation. The EUSANH network is a point of contact for the European authorities. This makes it possible to compete for European assignments from DG Sanco or DG Research and perhaps also for assignments from European agencies such as European Food Safety Authority (EFSA) and European Centre for Disease Prevention and Control (ECDC). The broad range of topics that are handled by member SABs enables the EUSANH to offer its services in a wide variety of fields.
Issuing advisory reports at the European level adds to the recognition of the network, thereby increasing the value of its advisory reports. Such assignments make it possible to obtain funding, which can in turn contribute to the reduction of the cost of the secretariat.
Policy makers also benefit from cooperation, being able to make use of the EUSANH's high quality SARs as a foundation for evidence-based decision making. In addition, policy makers can add health topics for SARs and help to identify knowledge gaps that will lead to new priority health research programmes. This is not only true at the national level, but also at the multinational and European levels.
Cooperation structure
We propose the following aspects of a cooperation structure:
1. SAB commitment: the most important components of a sustainable structure are the members of SABs and their willingness to cooperate.
2. The EUSANH network: the best way to facilitate cooperation is via a network with a structure, a methodological framework, agreements, annual meetings, a website, a board and a secretariat.
3. Expert groups: if two or more EUSANH member organisations from different countries decide to cooperate on the preparation of a SAR on health, they may form an expert group. This could be on the members? own initiative (bottom-up) or upon request by a third party (top-down). In both cases the SABs form the link between the experts and the expert groups and are therefore in charge of finding the right expertise and providing financial and administrative support to the experts.
4. Secretariat: a fixed secretariat which supports the running of the network is essential. It will coordinate communication within the network, monitor the budget, serve as a point of contact for third party SAR requests, support expert groups, organise the annual meeting and assist the executive board. The secretariat is to be integrated into one of the member SABs.
5. Audit committee: an audit committee will be set up during stage two of the establishment of EUSANH, to ensure the quality of SARs.
6. Methodological framework: it is crucial to have a rigorous common methodology for producing science advice. See the previous section for a summary of the proposed approach.
7. Annual meeting: the EUSANH organises an annual meeting, which aims, amongst other things, to strengthen relations between SABs, take important joint decisions, review advisory reports and exchange ideas with the USA Institute of Medicine (IOM).
Management structure
Organisational structure
The governing council is the governing body of EUSANH. Normally the council meets once a year. Each member has a representative in the governing council. The president of the council is the president of EUSANH and also the president of the executive board. The executive board is made up of five members from different member organisations and is responsible for the overall direction and management of the interests of EUSANH. EUSANH's structure will further include a secretariat to support the day-to-day running of the network, expert groups formed to prepare joint science advisory reports and (in time) an audit committee to ensure the quality of advisory reports. The secretariat will be hosted by one of the participating bodies.
Communication structure
The following is an outline of the main communication channels to be used by EUSANH members. As a rule, the working language is English. The exception is in instances in which two or more SABs decide to work on a bottom-up advisory report in a different, common, language. In these cases there should be an English translation.
Internal communication channels for the EUSANH network
1. E-community: the members-only part of the e-communication system is the linchpin for communication between members of the network.
2. E-meetings: for the executive board and expert groups.
3. Face to face meetings: will be necessary from time to time, for expert groups to get to know each other.
4. Annual meeting: this is an important fixed event for the network as a whole.
5. Email and telephone: remain important means of communicating from a distance.
External communication channels for the EUSANH network
1. Website: the EUSANH website (http://www.eusanh.eu) is a central communication platform not only for members but also for external stakeholders and the general public.
2. EUSANH newsletter: the secretariat prepares a quarterly newsletter and distributes it to all EUSANH members, advisors, relevant stakeholders and public groups.
3. E-community: an electronic communication system was set up to provide a library of scientific opinions and advisory reports. SABs should place issued advisory reports on the e-community. Further, the discussion and survey tools can be used for transnational debate with experts, citizens and policy makers.
Financial framework
Annual membership fees
The EUSANH needs to become independent from European funding and should be able to function on the basis of contributions paid by its members. We need EUR 50 000 a year for administrative costs plus additional activities such as annual meetings and e-meetings. The governing council decides on the manner in which the fee is calculated. The SAB which accommodates the secretariat and thus already carries a significant part of the expenses is exonerated from paying the membership fee.
Expert group budget for bottom-up advisory reports
Expert groups and their SABs are responsible for their own budget. They can seek financial support from their organisations or ministries of health and can accept appropriate donations and grants from EU institutions, governments, international non-profit organisations and partner organisations.
Top-down advisory reports
Organisations which request the network's advice shall pay for this service. The network can also sign up for European programmes for which grants are awarded.
Legal aspects
The future EUSANH network will have to determine whether it should be established as a legal entity, taking into consideration the national legal acts that create SABs, as well as questions of liability and official commitments, use of time and budget and the legal status of the experts within the expert groups. Possibilities for becoming a legal entity include an international non-profit organisation or a de facto partnership. Options should be thoroughly looked into by founding members.
New EUSANH organisation
To formally launch the (sustainable structure of) new EUSANH organisation, a founding meeting took place in Bucharest on 13 and 14 October 2011. Presidents of 17 science advisory bodies from more than half of the European member states became 'founding members' of the new EUSANH organisation. These members convened in the first meeting of the governing council and agreed on the constitution and on membership. On that occasion, the first 'EUSANH president's dinner' was also launched: a yearly occasion to meet and discuss the most challenging health issues the member states are confronting.
A case study: Determinants of a successful implementation of population-based cancer screening programmes
This section summarises the conducting and outcomes of a pilot European advisory report to illustrate and test the common methodology that was implemented.
The objective of the pilot case study was to report on the processes and procedures needed for a successful implementation of population-based screening programmes for cervical, breast and colorectal cancer.
Background
The uptake and practices of cancer screening programmes have been studied in recent reports, showing substantial variation between European countries. Detailed EU guidelines for cancer screening programmes do exist. In December 2003, the Council of the European Union stated that evidence exists concerning the efficacy of screening for breast, colorectal and cervical cancer. It also stated that before decisions can be made on the implementation of screening programmes ethical, legal, social, medical, organisational and economic aspects have to be considered.
However, existing guidelines are not always implemented. There is therefore an additional need for knowledge and recommendations addressing policy makers about critical factors for successful cancer screening implementation.
Framing the question
What are the important organisational aspects when implementing cancer screening programmes? How can barriers to participation in organised screening programmes be reduced? What advice can be given to decision makers in a European country wanting to initiate a cancer screening programme?
It is important for the SAR to be relevant for any European country, regardless of the present organisation of their health care system or if an organised cancer screening programme is already existing or planned. This report is addressed to the Minister of Health in a European country. It therefore focuses on general aspects and success factors that can be extrapolated from one cancer screening programme to another. The purpose is to facilitate decision making in a region or country where there is a will to initiate or improve the implementation of a cancer screening programme.
Advice to the minister
Any decision to implement a cancer screening programme should take into account existing EU recommendations and guidelines such as the Recommendation on Cancer Screening of 2 December 2003 issued by the Council of the EU; the European Guidelines on quality assurance in breast, cervical and colorectal cancer screening; and recent reports on the implementation of cancer screening programmes in the EU. These references recognise that societal values in addition to professional, technical and scientific standards are of prime importance in any decision to implement cancer screening programmes. Furthermore, there is no doubt that a population-based approach to programme implementation as recommended by the Council of the EU and the European Guidelines is more equitable, more effective and more cost-effective than an opportunistic approach.
Experience in Europe shows that successful implementation of population-based cancer screening programmes requires long term political commitment, a comprehensive quality management programme and sustainable resources. In a fully established programme the proportion of the expenditure devoted to quality assurance should be no less than 10 to 20 %, depending on the scale of the programme.
Once the political decision has been taken to establish a population-based cancer screening programme, a competent programme coordinator should receive the mandate to manage the entire implementation process, beginning with a planning phase and followed by feasibility testing, piloting and, depending on the interim results, the subsequent gradual rollout of the programme. Relevant existing expertise in Europe should be available through the European cancer screening networks and the European Guidelines development activities, coordinated by the International Agency for Research on Cancer (IARC) and related initiatives such as the European Partnership for Action Against Cancer (EPAAC).
Additional systems are necessary to adequately monitor and evaluate the quality and outcome of the screening programme, including linkage of individual data on cancer occurrence and morbidity, screening history, diagnosis, treatment and vital statistics. Furthermore, key performance and quality indicators of the screening process must be recorded and monitored and the results must be analysed and used for quality management processes. Monitoring and evaluation reports must be published regularly to inform the public and decision makers and to permit timely modification of programme policy if necessary. The experience of EUSANH in developing advice for health policy making, taking into account not only scientific and professional but also societal aspects, could play an important role in this regard in the future.
Methodology
The science advice revolved around a workshop in Stockholm, Sweden, from 7 to 9 February 2011. Representatives from the European Commission, the European Cancer Patient Coalition and WHO Europe were present as observers.
Using available evidence
Background material was produced prior to the meeting of the expert group, including an overview of reports on participation rates and informed decision making and a literature review of organisational and economic aspects of cancer screening.
Expert judgment
An expert committee was established, made up of professionals from different European countries. Several of the experts have many years' experience in working with related questions on a European level and have previously been involved in writing European guidelines on cancer screening. The areas of expertise covered by the committee included cancer epidemiology; health care systems; implementation; policy barriers; oncology; health economics; and medical ethics.
The assignment was to complete the literature review produced for the workshop in Stockholm by adding conclusions and recommendations.
The workshop started out with scientific presentations by participants, illustrating key issues regarding cancer screening implementation in Europe. The presentations were followed by a general introduction to the purpose of the workshop, including an explanation of the principles and guidelines for enhancing the quality and efficiency of science advice. The committee was officially installed by a round in which the experts presented potential conflicts of interest. No conflicts of interest were found.
Discussion in expert group
The committee was divided into two working groups: one with the initial assignment to complete the background document on participation rates and informed decision making and the other with the task of discussing organisational issues.
One of the groups concluded the first day that providing recommendations on determinants is a prerequisite for organising population-based screening. Therefore they suggested drafting a document on the general topic determinants of a successful implementation of population-based cancer screening programmes? with important points that should be considered when implementing a cancer screening programme. This idea was presented to the entire expert committee and resulted in a deeper discussion on results. The conclusion was that the results should not duplicate the present European Community (EC) guidelines, but rather be a guide for policy makers for decisions pertaining to implementation.
It was also agreed that a statement should be written, supported by the detailed document. The statement should exceed the evidence-base and also include the expert judgment of the committee. The experts could now choose which document to work on and were again divided into two groups. By the end of the meeting the two documents had been drafted and experts had been assigned to complete them and circulate them for comments.
Evaluation of the advisory process
1. The expert committee highly appreciated the evidence-based approach and valued the prepared background material distributed before the meeting.
2. The chair persons played an important role in the whole workshop process. As there were many different expectations about the meeting the chairs were also needed to help focus the discussion.
3. There are clear advantages of science advice on a European level based on work of a European expert group. It is high time to move forward with European collaboration on science advice on health.
A EUSANH science advisory report on childhood leukaemia
To have an additional test of the common methodology set out in section II, a second EUSANH science advisory report has been prepared during the project period. It is the so called bottom-up collaboration between the Dutch and Belgian Health Councils on the topic childhood leukaemia and environmental factors. All EUSANH member experts will have the opportunity to peer review the draft and EUSANH members can use the science advice in their country. Although still lessons (such as fewer but longer f2f meetings, more time in between f2f meetings) can be learned, the advantages of cooperation are evident.
Potential impact:
Exchanging knowledge, expertise and work programmes
We expect that exchanging and sharing knowledge, expertise and work programmes and collaborative work on common and transnational health issues, will help to produce better quality science advisory reports more efficiently by the participants in the individual Member States. The consensus formation on preferred practices and quality standards that have been developed in the methodological framework and the published science advice (International Journal Cancer) will help to achieve this. All information at the EUSANH website and e-community will at the same time promote open access to the core issues in using scientific knowledge for decision-making.
Overlapping topics from EUSANH members' work programmes 2011 included vaccination (influenza, national vaccination programmes); mental health and psychosocial factors (psychotropic medicine, Psychosis/schizophrenia, depression, autism spectrum disorders), violence against children, health technology assessment (HTA) for dental health; environmental health (childhood leukaemia). As mentioned above the collaboration on childhood leukaemia has started and is in its final phase.
EUSANH future activities
The (new) EUSANH executive board is convinced that joint actions (JA) could benefit from an independent base-line report on the state of knowledge. Therefore, we contacted the JA 'human immunodeficiency virus (HIV) prevention' and 'mental health and well being' to discuss this. At least for the JA HIV prevention, EUSANH will be a collaborating partner. Further, EUSANH is willing to work on a new operationalisation of the definition of health in follow-up of the British Medical Journal (BMJ) discussion (July 2011). EUSANH considers this topic of utmost importance for the European Commission also in relation to the European Innovation Partnership in the field of active and healthy ageing.
Recently, EUSANH accepted the invitation to participate in the stakeholders' advisory board on the EU joint programming on a healthy diet for a healthy life. Further information can be found at 'http://www.healthydietforhealthylife.eu'.
Next EUSANH annual meeting at the European Public Health Conference
The executive board decided to have the EUSANH governing council meeting during the European Public Health Conference that would be held from 7 to 10 November 2012 in Malta. Moreover, we will opt for a EUSANH workshop on vaccination schedules in the member states.
List of websites:
'http://www.eusanh.eu'.
Contact person: Dorine Coenen d.coenen@gr.nl; eusanh@eusanh.eu.
