united kingdom - The European Public Health Association

PHIRE – Public Health Innovation and Research in Europe Country Report

UNITED KINGDOM

June 2012

EUPHA European Public Health Association P.O. Box 1568 3500 BN Utrecht The Netherlands

This report has been compiled by: Dr Mariana Dyakova, University of Warwick, UK On behalf of the UK Faculty of Public Health (FPH) and the Society of Social Medicine (SSM), under the extensive guidance of Prof Mark McCarthy (University College London, EUPHA Research Lead) and Prof Aileen Clarke (University of Warwick, FPH Research Committee, SSM). The national meeting organisation and information collection was largely facilitated by Dr Sheena Parker (FPH International Committee), Prof William Maton-Howarth (EU advisor, former Chief Research Officer, DH) and Dr Noriko Cable (SSM Committee). Special thanks to Prof Pat Troop, CBE (FPH, Chair of the International Committee) for supporting the project and chairing the National Meeting. We are also grateful to all of the public health stakeholders and FPH administration who contributed to PHIRE Phase II and the final report.

This publication arises from the project ‘PHIRE - Public Health Innovation and Research in Europe’, Agreement Number 2009 12 14, which has received funding from the European Union, in the framework of the Health Programme. PHIRE is implemented from 1 September 2010 until 28 February 2013. PHIRE is coordinated by the European Public Health Association (EUPHA). Associated partners are: EHESP, School of Public Health (FR); Faculty of Public Health (FPH, UK); Institute of Hygiene (LIH, LT); Karolinska Institute (SE); Ministry of Health, the Elderly and Community Care (MHEC, MT); NIVEL – Institute for health services research (NL); Slovak Public Health Association (SAVEZ, SK).

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Contents Introduction..........................................................................................................................................................................5 1. UK Public Health Research System ........................................................................................................................7 2. PHIRE Innovation Projects ..................................................................................................................................... 10 3. UK Health Research in a European Context .................................................................................................... 12 4. Conclusions and Recommendations ................................................................................................................... 14

Appendix 1. Agenda of the meeting ........................................................................................................................ 16 Appendix 2. List of participants ................................................................................................................................ 17 Appendix 3. List of distributed documentation .................................................................................................. 18 Appendix 4. Copies of press release ........................................................................................................................ 19

Additional Information (Supplements).................................................................................................................. 20 Supplement 1: PH research system (history, stakeholders, strategies) .............................................. 20 Supplement 2: UK public health programmes and calls, 2010 ................................................................ 28 Supplement 3: PHIRE tracer projects in the UK ............................................................................................ 29


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List of Abbreviations AMRC AMS BBSRC BHF BIA CRUK CSO CSR DG SANCO DH EU EPSRC ESRC EUPHA HRCS HTA ICD MRC NCRI NERC NHS NIHR NPHA NPRI PH PHIRE PPI R&D SPHERE STEPS STFC UK UKCRC WORD WHO

Association of Medical Research Charities Academy of Medical Sciences Biotechnology and Biological Sciences Research Council British Heart Foundation Bio-Industry Association Cancer Research UK Chief Scientific Office Comprehensive Spending Review Directorate General for Health and Consumers (EU) Department of Health (UK) European Union Engineering and Physical Sciences Research Council Economic and Social Research Council European Public Health Association Health Research Classification System Health Technology Assessment International Classification of Diseases Medical Research Council National Cancer Research Institute Natural Environment Research Council National Health Service National Institute for Health Research National Public Health Associations National Prevention Research Initiative Public Health Public Health Innovation and Research in Europe Public and patient involvement Research and Development Strengthening Public Health Research in Europe Strengthening Engagement in Public Health Research Science and Technology Facilities Council United Kingdom UK Clinical Research Collaboration Wales Office of Research and Development World Health Organisation


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Introduction

Report development and importance This report provides a summary of the UK public health (PH) research system and policy, placed in a European context. It draws from two previous European Union projects: SPHERE (Strengthening Public Health Research in Europe) http://www.ucl.ac.uk/public-health/sphere and STEPS (Strengthening Engagement in Public Health Research) www.steps-ph.eu. It contributes to a third, current project PHIRE (Public Health Innovation and Research in Europe) http://www.eupha.org/site/projects.php?project_page=12, for which a UK Stakeholders Workshop was held on 1 May 2012. The report represents the views of the two UK National Public Health Associations (NPHAs) – the Faculty of Public Health and the Society for Social Medicine, together members of the European Public Health Association (EUPHA). The report seeks to: 1. Provide evidence on public health research performance and impact at the European and national level, including the uptake of European public health projects; 2. Advocate and defend increased funding for evidence-based public health research; 3. Benchmark public health research and propose a common knowledge database to share existing research projects and best practices, promoting national and international collaboration; 4. Stimulate Governmental awareness, involvement and responsibility (including funding) in public health research and to facilitate translation of research into policy and practice.

Concept Public health policy and practice draw on research at population, organisation and system level, using statistical, social and behavioural science methods, linking with laboratory and clinical medicine, and with wider fields including environment, nutrition and economic sciences. Health is achieved through public health interventions as much as through medical treatment. Public health research is considered here, to include all types of studies related to population health and wellbeing, excluding individual clinical research (e.g. pharmacological and diagnostic trials). There is also overlap between public health research and other disciplines, including health technology assessment, social and economic studies.


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The United Kingdom The United Kingdom includes four countries - England, Scotland, Wales and Northern Ireland, of which England is five-sixths of the total population. Some sectors are commonly administered by the UK government and some are devolved and regulated through the Scottish Parliament, the National Assembly for Wales and the Northern Ireland Assembly. Thought UK government reports to Europe on a UK wide basis, health is devolved, i.e. it is managed separately in each of the four countries. Thus there is no common “Ministry of Health” but four Health Departments. Here, the term “national” will be used for any of the four countries, while “UK” will be used for issues concerning the whole state (all four of them). The UK research councils are together accountable to the Department for Business, Innovation and Skills – with an economic agenda – and are also represented at the European Union level through BIS. While the Medical Research Council provides most health research funds, other councils also fund research relevant to health, including the Economic and Social Research Council. Public health research is mainly realised through programmes of the NIHR and MRC, and also the European Union (EU). It is a complicated picture to describe and understand (see Figure 1). Despite the PH research split among the four UK countries, priorities, policies and programme themes are similar, due to the common health and population challenges throughout the UK as well as the communication between funding agencies. It was recognised that more active collaboration among the four health departments would benefit not only public health research, but also implementation in policy and practice. There are similar opportunities for collaboration across Europe. This report is written in a period of major change in the health system in England, posing significant uncertainties and challenges. The public health system and workforce is being transferred from the NHS into local authorities and a new ‘executive agency’ - “Public Health England”. Concerns has been expressed both about how to protect local resources for public health research, and also how to maintain public health sciences to provide research evidence and practice.


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1. UK Public Health Research System The present UK public health research system is complex and multilevel, across the four countries, and including numerous stakeholders – governmental, voluntary, scientific and commercial. The following figure (adapted from STEPS report1) presents the structure for providing and managing PH research mostly from a financial flow perspective (Figure 1). Figure 1: Public health research stakeholders in the UK

There is no single UK PH research strategy. There are a number of public health / research and innovations strategies for each country. Each funding body for health research has its own strategic plans and framework for delivery. The strategic cycles also differ, e.g. between the Research Councils and the NIHR. However the various strategies are aligned through collaboration, with linked national and UK priorities. For public health research, these include more academic capacity building; multi-disciplinary and collaborative work both within the public health research community and between academics, practitioners and policy makers; more investment in translational and applied research; maximising the use of existing data; development of new methodologies and evaluation measures.

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STEPS Country Research Profile – United Kingdom http://www.steps-ph.eu/country-research-profiles/


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In general the NIHR scope is mostly on applied health research, while MRC is mainly focusing on basic science. A schematic organisation of PH research system is shown in Figure 2. Some organisations are primarily funders, such as the NIHR; some are mostly research performers, e.g. universities and some are mixed – both commissioning and providing PH research, e.g. the Department of Health, the MRC, scientific collaborations and networks. The public health research funders have established long-term programmes and fellowship schemes as well as they announce short-term calls (for one to several years) for specific priority health topics or fields of research. Figure 2: Overview of the public health research funders and performers

In general, as discussed during the National Meeting, a relatively good system of communication has been established among the research funders in the last years, e.g. NIHR and MRC have representatives in each other’s boards, there is distribution of priorities etc. There is also good collaboration with the third sector and the health industries. However, there is a significant vertical PH funder – researchers split. There are no visible and consistent channels for communication; also lack of understanding and difficulty in perceiving the variety of organisations, programmes and calls and their requirements. This creates uncertainty, tension and additional effort in making use of the numerous funding opportunities, adapting to different requirements, time-scales and priorities. Despite the NIHR attempts to identify gaps in practice (mostly clinical) and support translational research, there is still a need for clear and regular alignment between the PH research gaps and the funders’ policies. On the other hand there is also considerable lack horizontal communication and collaboration among the PH researchers themselves. This can be contributed to several major factors: the long standing tradition in health research and training, still bound to certain universities; the sense of professional independence; the competition between individuals and scientific groups; the contemporary system of research evaluation and promotion; and the PHIRE – Public Health Innovation and Research in Europe

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continuing historical dominance of the medical (clinical) science and profession over the public health domain. Another important issue is the insufficient translation of research findings into PH policy and practice. On one hand there are efforts to increase evidence implementation, i.e. NICE itself and through research centres like Warwick Evidence perform reviews of research to inform practice. On the other hand the emphasis is still mainly clinical, focusing on Health Technology Assessment (HTA) and less on broader public health interventions. The impact of many PH studies remains unclear. Moreover, changes in population health and health policy are almost always results of research in different scientific fields. There is a necessity for new high quality research methods to better explain the relationship between public health research and impact. And finally, the complexity and variety of the PH research landscape allows for increasing number of different studies, which can’t be accessed in their full from the researchers and the public. This issue was also discussed during the UK National Meeting, identifying the need for a PH research register - a single database of evidence to be collected and easily accessed. Based on the review of the information provided in the first phase of PHIRE and the National Meeting on 1 May 2012, the two NPHA agree on the following comments: 1. There are clear roles, responsibilities and relatively good communication (collaboration needs improvement) between the Departments of Health, the main PH funders (NIHR and MRC) and other UK Research Councils as well as with the voluntary and the commercial sectors. However there is considerable vertical (funders – researchers) split as well as scarce collaboration among PH researchers, especially across disciplines (see supplement 1). 2. Research commissioning is led by a number of UK and national research strategies and realized through specific PH funders’ policies and frameworks. This makes the funding opportunities landscape difficult to access and influence (see supplement 1). 3. A full range of public health research fields (including health promotion, health services epidemiology, surveillance, management, wider determinants) was commissioned in 2010 (see supplement 2). The funding is both top-down (specific health priority topics calls) and bottom-up (research driven). 4. Public health research is open to wide range of researchers and organisations, taking into consideration civil society representation and extending to the health industries. Public and patient involvement (PPI) is well developed but still needs further improvement and clarification of powers and responsibilities, linking also to the European priorities and developments in the area (see supplement 1). 5. Public health research funding is presently challenged by the English health and social care reforms. Recent UK strategic documents (e.g. the Comprehensive Spending Review, 2010) have again prioritised biomedical and life-sciences exploration with less attention to the translational, social and organisational PH fields. 6. There are also positive developments under the new “Public Health England”. A ‘virtual’ National Institute of Public Health has been set up with a number of University Departments being given particular roles in different aspects of PH research. PHIRE – Public Health Innovation and Research in Europe

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2. PHIRE Innovation Projects Seven reports on five innovation (tracer) projects were provided by EUPHA Section members in the UK. UK was involved directly as a partner and/or collaborator in all of the eight projects. Detailed description of the individual projects and their impact on UK level is attached in Supplement 3. The PHIRE Tracer Projects report can be found at: http://www.fph.org.uk/uploads/PHIRE_WP4_tracer%20projects_UK_2011.pdf Based on the review of the information provided in the first phase of PHIRE and the National Meeting on 1 May 2012, the two NPHA agree on the following comments: 1. There is considerable variability in the implementation, impact and dissemination of the different tracer projects. Some of it is due to the variable reporting as well, not always done by the researcher involved in / responsible for the project. 2. UK received responses from the following projects: CHOB, URHIS I, CSAP, EUCID, ENHIS. Child Health and Obesity (CHOB) was an important issue, and the project focus within UK, in association with the National Heart Forum, was on access to low cost high quality food, and regulation of food marketing to children and of the nutritional criteria for foods promoted to, or served to children. Urban Health Indicator Systems (URHIS I) proposed determining the availability of 45 urban health indicators. In the UK, cities included Birmingham, Cardiff, Glasgow and Manchester and the project helped identify variations across UK as well as in comparison with other European cities. In Child Safety Action Plans (CSAP), six countries including Scotland were able to organise a government endorsed child safety action plan. In the UK there was a call for more evidence-based policy, funding for injury prevention measures, and strengthening research capacity. European Core Indicators in Diabetes (EUCID) aimed to collect and compare population indicators on diabetes risk factors, complications and quality of care. UK contribution was divided into England and Scotland. National data are mostly available in England, while Scotland reported on the Tayside register data, a partner in another European project Better Indicators through Regional Outcomes (BIRO). For Environmental and Health Information Systems in Europe (ENHIS), fact sheets on hazardous exposures were developed for topics including damp, cadmium in food, radon and work injuries. Of the five responses, there were fuller responses about impacts for three projects. Two were considered projects were of ‘great’ relevance to the UK, and one of ‘some’ relevance and that had been considerable dissemination to government, media, NGOs and universities.


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Some national impacts were described: - CHOB had informed consultation on, and regulation of, food advertising, and supported the evidence base at local level. - CSAP had contributed to child injury prevention being one of four priorities for Scotland’s new approach to child environment, and the project had assisted keeping child accidents on governmental agendas. - For diabetes indicators, respondents described both low and high impacts – the latter including their use by national NGOs as well as a project for children. No respondent was able to identify subsequent health benefits. A limitation of one tracer project was the lack of consistency and availability of data about other countries for international comparisons. Factors facilitating two projects included sufficient financial resources, support from stakeholders, and established international networks; however, for diabetes indicators, there was already sufficient national interest. 3. None of the public health research stakeholders (funders and scientists) at the National Meeting felt informed about the projects, or their impact. A representative of one of the Health Departments stated that, an investigation for research in health technology assessment had not shown any duplication by European research. 4. No additional information was provided by the NPHAs. 5. There is UK public health research in all the areas of the eight PHIRE tracer projects. Specific public health research programmes, covering these in the UK, are: -

NIHR Programmes - the Public Health Research (PHR) programme and the HTA Disease Prevention Panel; Grants for Applied Research; Research for Patient Benefit (RfPB), covering diabetes prevention, healthy aging and mental health etc;

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The DH Policy Research Programme, covering air pollution and communicable diseases control;

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The National Prevention Research Initiative, NPRI, covering diabetes prevention, healthy aging and mental health.

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A number of programmes, funded by the third sector (diabetes, mental health etc).

However, it is not possible from the existing information systems to track research programmes specifically related to the eight tracer projects, so that there could be duplication.


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3. UK Health Research in a European Context European Union (EU) policy is promoting research and innovation for economic development and to address ‘grand challenges’ for society, including ‘active and healthy ageing’. This requires the leadership of the Departments of Health; active collaboration towards a European Public Health Research Area and increased dedicated funding for public health research nationally and internationally. The review of the UK health research and the public health stakeholders’ discussion identified the existing UK (national) - EU collaboration in the field of PH research. A new national meeting is proposed in one year to follow up the EU opportunities arising and how to ensure their best dissemination and use at UK level. In general, communication and collaboration with the EU on PH research at UK and national level needs improvement. On the other hand, funding opportunities and provision of expertise is very well employed on ‘individual level’, e.g. UK universities and consortia are active in using EU project funding and UK experts are involved in European decision-making processes. UK strategic priorities and policies are determined on the basis of national and local health needs and evidence gaps. European agenda is not considered as a guideline, though most of the European, UK and national priorities are the same, determined by the common PH challenges. On the other hand, PH research performers (universities and scientific collaborations) manage to attract and deploy substantial number of EU funds. Also, EUlevel networks and projects (e.g. HTA, health intelligence etc) have UK / national participation. The latter is managed through the big PH funders (NIHR, MRC) or other institutions (HPA, PH observatories). Individual expert participation and contribution of UK representatives in the European PH forums, organisations and projects is substantial. Incentives for EU/UK research collaboration: 1. Creation of common databases and registries to avoid duplication, share best practices and enhance impact; 2. Standardisation of PH research methodologies and outcomes; 3. The new EU funding programmes – Horizon 2020 and Health for Growth, through increased budget for PH research and simplified procedures; 4. The national health and social care reforms, posing a great challenge in front of the PH professionals and researchers; 5. Government cuts for education (incl. University subsidies) and directing the research funding mostly to basic science and clinical technologies; 6. The Euro-zone crisis, posing significant challenges to national economies and societies. Disincentives for EU/UK research collaboration: 1. General unease about EU funding opportunities, because of their inadequate UK / national coordination and support;


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2. Partial project funding (usually 60% to 80%) and the need for co-funding from the applying institution / consortium; 3. Explicit requirements for large project collaborations / consortiums; 4. Extremely complicated application and reporting procedures and huge administrative burden, which cannot be resolved by the local EU office; 5. ‘Low quality’ of publications produced, according to the UK Research Excellence Framework (REF). This is also determined by the traditional peer review process, accepting mostly original and basic research as ‘high quality’ compared to applied and comparative studies, largely done at European level. No formal position on the Horizon 2020 programme was available from the UK Department of Health. The Research Councils represent the UK position to the EU through the Department of Business, Industry and Skills. The Medical Research Council coordinates with the Department of Health. The NHS research organisation, the National Institute for Health Research, does not have an active position about Horizon 2020 or European health research. The UK Department of Health has no position on the use of Structural Funds for health research, and is not engaged with the Treasury (Ministry of Finance) on the use of Structural Funds. (In the UK, Regional Funds go to certain non-central areas, and contribute in capital spending, while European Social Funds go mainly to city areas and contribute to employment.) The priorities for health research are set by the MRC’s programmes, which include open calls, focused calls and dedicated long-term funded units (now mainly placed within universities). Broad priorities for NIHR research are set through its programmes, which each hold a budget allocated by the NIHR board and manage the distribution in partly-competitive calls. ‘Public health’ research for the NIHR is focused on ‘complex’ non-health service interventions, but NIHR also prioritises organisational and services research within the broader European definition of public health research. The four health departments fund NHS research independently. The largest, the English National Institute for Health Research, has a budget of around €1bn – around 1% of the NHS. The Culyer Report (1994) set a target to spend 2% of health funds on research. Adding the NIHR with MRC (€800m) and health aspects of ESRC (unknown, perhaps €50m) comes approximately to 2%. Thus, the ‘ministry of health’ and the ‘ministry of science’ have approximately equal shares of the total health research budget. Around €50m annually may be allocated to public health research by each of the two organisations.


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4. Conclusions and Recommendations Conclusions: 1. The UK public health research system has a complex and multilevel structure with numerous funding, performing and collaborative organisations and programme based commissioning. 2. There is generally good communication and coordination among the four countries and the major PH funders and their strategies follow commonly identified vision and priorities. 3. A vertical funder / researcher split exists, characterised mainly by lack of dialogue and feedback and overcomplicated access to funding sources. 4. There are also insufficient horizontal researcher / researcher communication and collaboration. 5. PH research is still overtaken by biomedical sciences and clinical technology innovations, leaving a small funding share for cross-discipline / multidisciplinary social and organisational research. 6. Despite some government efforts and structural reorganizations, there is unsatisfactory translation and implementation of research findings into policy and practice. 7. The EU policy and agenda have little or no influence on UK and national PH research, though common priorities are identified. 8. There are a number of disincentives for collaboration between the UK and the EU as well as incentives to improve it in the future. 9. The new EU programmes present opportunity for incentivizing PH funders and researchers for developing future European-level partnerships. 10. Some of the European PHIRE tracer projects were well conducted and produced considerable impact nationally and locally. However, all of them had insufficient publicity and dissemination of results, not reaching any of the important PH stakeholders.

Recommendations: 1. Departments of Public Health should take the leadership at national level and collaborate with the national PH associations (FPH & SSM) to promote PH research and EU collaboration. 2. A strong concerted action of PH professionals and researchers is needed to defend the importance of PH research funding in the UK and locally, ensuring a minimum of 25% of the total health research funding allocated to PH.


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3. The PH stakeholders’ dialogue must continue on wider basis, leading to more active and structured collaboration to address the major PH challenges through applied PH research. 4. PH funders should initiate and adopt a process of unification and simplification of PH research commissioning, making the access to it easier. 5. A common PH research database and registers should be developed at UK and EU level, preferably using European funding and collaborative expertise. 6. The new EU programmes (Horizon 2020, Health for Growth and the Structural Funds) should be used as an incentive to improve UK/EU partnership and boost PH research. 7. The research quality evaluation and the peer review process should recognize the population and health system significance and impact of applied, collaborative and comparative research as well as their added value to society and growth. 8. Patients and public should be put in the centre of any health research and empowered to fully participate in decision-making. 9. EU-funded projects and their impact should be better communicated at a national level.


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Appendix 1. Agenda of the meeting

UK PHIRE PHASE II NATIONAL MEETING 1st of May 2012, 14.00 – 16.30 Faculty of Public Health, 4 St Andrews Place, London, NW1 4LB

MEETING OBJECTIVES 1. To discuss public health research in the UK (current system, policies, programmes and tracer projects impact) and agree on the UK national report for PHIRE. 2. To inform public health stakeholders about European public health research in the UK (PHIRE, STEPS and SPHIRE) and discuss possibilities for future research and innovation. 3. To engage with the new European funding opportunities (Horizon 2020 and Health for Growth) and place UK public health research in context of the European agenda. 4. To promote better engagement of the National Public Health Associations in national and European research agendas. 5. To consider effective translation of public health research into policy and practice.

AGENDA 13.00 – 14.00 14.00 – 14.10 14.10 – 14.30 14.30 – 15.30   15.30 – 16.20  

16.20 – 16.30

Arrival and networking lunch Welcome (Dr Pat Troop, CBE) and Introductions Introduction to the PHIRE project and its European and national context(Dr Mariana Dyakova, PHIRE phase II coordinator) Round table discussion (Chair: Dr Pat Troop), asking participants to describe their knowledge and opinion on: UK public health research system and the links among the different stakeholders, incl. the DH and the European Union in general; uptake of the research in the 8 tracer project themes. Overall discussion (Chairs: Dr Pat Troop and Prof. Mark McCarthy): How the available information (National Report) can be improved? How to continue the dialogue and promote coordination among stakeholders on development of UK's public health research and contribution to / participation in the European public health research (in the forthcoming Horizon 2020 programme and in 'Joint Programming' collaborations among countries). Conclusions and closing remarks


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Appendix 2. List of participants UK PHIRE PHASE II NATIONAL MEETING 1st of May 2012, Tuesday, 14.00 – 16.30 Royal College of Physicians, Faculty of Public Health, London

LIST OF PARTICIPANTS 1. Prof Pat Troop, CBE, FPH, International Committee chair (meeting chair) 2. Prof Mark McCarthy, PHIRE lead and UK Phase I coordinator, UCL 3. Prof Aileen Clarke, FPH, Research Committee / SSM 4. Prof Alastair Leyland, SSM Committee / MRC Scotland 5. Dr Jennifer Mindell, SSM Honorary Secretary 6. Dr Noriko Cable, SSM Committee 7. Mag Connolly, FPH, Head of Corporate Affairs 8. Prof William Maton-Howarth, EU advisor (former Chief Research Officer, Department of Health) 9. Dr Andrew Cook, National Institute of Health Reseacrh NETSCC (University of Southampton) 10. Dr Peter Craig, MRC Population Health Sciences Research Network, Scottish Government 11. Dr Ruth Jepson, SCPHRP / Centre for PH and Population Health Research, Scotland 12. Dr Dermot O'Reilly, UKCRC Centre of Excellence for PH, Northern Ireland 13. Prof Stephen Palmer, Health Protection Agency / Cardiff University, Wales 14. Angela Clements, NISCHR, Welsh Government 15. Dr Janet Valentine, Public Health and Ageing, Medical Research Council 16. Dr Michelle Jimenez, The Wellcome Trust 17. Dr Sara Hiom, Cancer Research UK 18. Dr Karen Lock, London School of Hygiene and Tropical Medicine 19. Dr Mariana Dyakova – FPH / SSM UK PHIRE Phase II coordinator 20. Press officer, FPH


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Appendix 3. List of distributed documentation 1. Meeting objectives and agenda (one page) 2. New European Union funding opportunities. New proposed EU health for growth programme (2014-2020) and Horizon 2020 – the new European framework programme (two pages document); 3. PHIRE UK report Draft 01/05/2012 (18 pages) 4. UK PHIRE Phase II summary (two pages)


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Appendix 4. Copies of press release People’s health could be better protected if European research were more joined up, says Faculty of Public Health Immediate release People’s health in the UK could be better protected if there was a more joined-up approach to public health research across Europe, says the Faculty of Public Health (FPH) after a unique meeting was held on Tuesday 1 May. Leading research experts from academia, funding bodies and Departments of Health met for the first time on Tuesday 1 May to try and get an up-to-date picture of public health research in the UK and Europe. The meeting was organised by Public Health Innovation and Research in Europe (PHIRE), a European Union project which seeks to map, inform, support and promote public health research at national and European levels. It runs from August 2010 to January 2013 and is led by the European Public Health Association (EUPHA). FPH, a member of EUPHA, is leading the PHIRE project in the UK. Professor Lindsey Davies, President of the Faculty of Public Health, said: “FPH is pleased to have helped bring together so many experts to help establish if there are ways in research can be more effective and better protect people’s health in areas like vaccinations, children’s health and diabetes.” “We know that there is a lot of good work being done in the UK to link up public health research. Indeed, European funds were used to research air pollution, which led to a change in the law that has improved health. However, we do not know enough yet about the picture across Europe to be sure that work is not being duplicated. “That means that we may not be getting the most value from research that could save lives. We look forward to seeing how the PHIRE project can help public health researchers link up with their colleagues across Europe to better protect and improve people’s health.” NOTES TO EDITORS Please contact us for further details or to arrange an interview: Liz Nightingale, Media and PR Officer: tel 020 7935 3115, email [email protected], mobile 07773 350833 About the Faculty of Public Health (FPH) FPH is the standard-setting body for public health in the UK with more than 3,000 specialist public health members. FPH is a registered charity and advocates for better public health in the UK and around the world, by stimulating debate on promoting, protecting and improving the public's health. About Public Health Innovation and Research in Europe (PHIRE) PHIRE examines the uptake of European health projects in member states and is part funded by the European Commission’s Directorate for Health and Consumers (DG SANCO), It helps assess the value of the DG SANCO’s annual Health Programme, which has funded over 200 projects with overall budget of €20 million. About the European Public Health Association (EUPHA) EUPHA is an umbrella organisation for public health associations and institutes in Europe. With 72 members from 42 countries, EUPHA is an international, multidisciplinary, scientific organisation, bringing together around 12,000 public health experts for professional exchange and collaboration throughout Europe.


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Additional Information (Supplements) Supplement 1: PH research system (history, stakeholders, strategies) PH RESEARCH SYSTEM (HISTORY, STAKEHOLDERS, STRATEGIES) 1.1. HISTORY UK has a long tradition in public health practice and research, starting from the early 19th century (e.g. the English physician John Snow is considered to be the father of epidemiology). Research was generally driven by scientific curiosity and public funds were provided. Public health knowledge and interventions (including sanitation, immunisation and the improving socio-economic environment) saved millions of lives. In more recent decades, the epidemiologic transition2 has seen life-expectancy limited by chronic diseases. To tackle the latter and to enhance implementation of science into policy and practice, new approaches and a broader health research spectrum were required. The main funding for health research in the UK has been from the Medical Research Council, together with the Department of Health and the medical charities. From the 1970s (Rothschild Report) there has been some coordination between these bodies in the balance between biomedical ‘basic’ and clinical and organisational ‘applied’ research. Epidemiology and public health research was supported within broader ‘disease’ research and through the NHS. In 2004 the UK research councils and the NHS created the UK Clinical Research Collaboration (UKCRC), Its report “Strengthening Public Health Research in the UK”, addressed the totality of funding for the first time, and revealed that approximately two thirds was allocated to laboratory-based non-clinical research, while less than 5% of resources were spent on health and social care services research, 2.5% on primary prevention and health promotion research, and 1.5% on aetiologic research for psychological, social and economic factors. The Cooksey’s report, ‘A review of UK health research funding’ in 2006 a coordinating organisation - the Office for Strategic Coordination of Health Research (OSCHR3). However, its role and activity has gradually diminished in the last years. A new MRC/NIHR Translational Medicine Board was set up, together with a new joint Public Health Research Board and a new EHealth Board. The NIHR also established Public Health Research Centres of Excellence by competitive bids, to strengthen infrastructure and academic capacity. The NIHR also developed research through programmes for Service Delivery and Organisation, and Public Health Research The situation is becoming more challenging with the English health and social care reforms. Moreover, recent UK strategic documents (e.g. the Comprehensive Spending Review, 2010) have again prioritised biomedical and life-sciences exploration (including technological &

Omran, A.R. The epidemiological transition: A theory of the epidemiology of population change. The Milbank Memorial Fund Quarterly 49 (No.4, Pt.1), 1971, pp.509–38 http://www.milbank.org/quarterly/830418omran.pdf 3 http://www.nihr.ac.uk/about/Pages/about_oschr.aspx 2


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pharmaceutical innovation, and commercial development), with less attention to the translational, social and organisational fields of public health research.

1.2. PH FUNDING ORGANISATIONS AND RESEARCH PERFORMERS Some organisations are primarily funders, such as the NIHR; some are mostly research performers, e.g. universities and some are mixed – both commissioning and providing PH research, e.g. the Department of Health, the MRC, scientific collaborations and networks. The public health research funders have established long-term programmes and fellowship schemes as well as they announce short-term calls (for one to several years) for specific priority health topics or fields of research. THE NATIONAL INSTITUTE FOR HEALTH RESEARCH, NIHR (http://www.nihr.ac.uk/) The NIHR provides the framework through which the Department of Health maintains and manages the research, research staff and research infrastructure of the NHS in England, including public health priorities. In Scotland this function is performed by the Chief Scientist Office (CSO), in Wales - the WORD (Wales Office of Research and Development for Health and Social Care) and in Northern Ireland - the Health and Social Care Research & Development Office. The total NIHR budget for 2010/11 was £992m. http://www.nihr.ac.uk/research/Pages/programmes_research_programmes.aspx NIHR programmes:  The Public Health Research (PHR) programme commissions research to provide new knowledge on the benefits, costs, acceptability and wider effect of non-NHS interventions.  Health Technology Assessment (HTA) programme covers any method used by those working in health services and funds research on the costs, effectiveness and impact of developments in health technology.  The Health Services and Delivery Research (HS&DR) programme funds a broad range of research to produce rigorous and relevant evidence on the quality, access and organisation of health services, including costs and outcomes, to improve health services.  Efficacy and Mechanism Evaluation (EME) programme is supporting 'science driven' studies with for health or patient care, and contributing to understanding biological or behavioural mechanisms and processes.  Programme Grants for Applied Research (PGfAR) is directed towards applied health research.  Research for Patient Benefit (RfPB) programme is a response-mode programme for NHS research into everyday practice in the health service.  NHS Physical Environment Research Programme funds research on NHS estates and buildings. The NIHR School for Public Health Research, (launched in April 2012, includes eight academic centres in England, with up to £450,000 being awarded to each member of the School per annum. http://www.nihr.ac.uk/research/Pages/SchoolforPublicHealthResearch.aspx


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NIHR Collaborations for Leadership in Applied Health Research and Care, CLAHRCs are collaborative partnerships between a university and the surrounding NHS organisations, focused on improving patient outcomes through translating research into practice. They are specifically designed to take account of the way that health care is increasingly delivered across sectors and a wide geographical area. Each of the nine CLAHRCs, established in October 2008, have received up to £2m per year. http://www.nihr.ac.uk/infrastructure/Pages/CLAHRCs.aspx Academic Health Science Centres, AHSCs are partnerships between universities and the NHS (healthcare providers). They were developed as a result of the UK government’s report ‘High quality care for all’ 2008, setting out the vision for the NHS over the next ten years. NIHR Academic Health Science Networks will be established in 2012-13 for accelerating research adoption and diffusion, and align education, clinical research, informatics, innovation, training and education, and healthcare delivery. NIHR also commissions research for the National Institute for Health and Clinical Excellence (NICE) (http://www.nice.org.uk/) and supports the UK Cochrane Centre and the Centre for Reviews And Dissemination (http://www.netscc.ac.uk/systematic_reviews/#ri1). THE MEDICAL RESEARCH COUNCIL, MRC (http://www.mrc.ac.uk/index.htm) manages population health sciences rests with the Population and Systems Medicine Board (PSMB) and the Population Health Sciences Group (PHSG). There are also topics funded under the Infections and Immunity Research Board (IIB) and the Neurosciences and Mental Health Board (NMHB), and an international research portfolio including public health research. Epidemiology is supported through life course research and ageing initiatives. MRC has contributed to the National Prevention Research Initiative and the UKCRC Public Health Centres of Excellence. The MRC Population Health Sciences Research Network, PHSRN links thirteen MRC Research Units and Centres, aiming to bring together and add value to MRC's existing investments in public health, health services and epidemiology research. The focus of funded projects is on methodological knowledge transfer in the areas of translating population health sciences research into policy and practice; changing behaviour; improving the measurement of exposure, development and function; overcoming barriers to population health sciences research; and synthesizing evidence. http://www.populationhealthsciences.org/ THE NATIONAL PREVENTION RESEARCH INITIATIVE, NPRI is a multi-disciplinary UK initiative made up of government departments, research councils and major medical charities that are working together to encourage and support research into chronic disease prevention. MRC works on behalf of its 16 funding partners, with £2m per year (2008 – 2012). http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/NPRI/index.htm http://www.ncri.org.uk/default.asp?s=1&p=7&ss=2 THE ECONOMIC AND SOCIAL RESEARCH COUNCIL, ESRC (http://www.esrc.ac.uk/) funds research in social and economic issues. Its strategic areas include economic and social health determinants and the understanding of human behaviour with consequences for health and wellbeing.


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The UK Clinical Research Collaboration, UKCRC (http://www.ukcrc.org/home/), Public Health Research Centres of Excellence, managed under the ESCR, are designed to build capacity in public health research on complex public health issues. The five centres are: CEDAR, Centre for Diet and Activity Research; DECIPHer, Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement; Centre of Excellence for Public Health Northern Ireland; Fuse, Centre for Translational Research in Public Health; UKCTCS, UK Centre for Tobacco Control Studies. http://www.esrc.ac.uk/about-esrc/what-we-do/our-research/ukcrc.aspx; http://www.ukcrc.org/researchcoordination/jointfund/publichealth/ THE SCOTTISH COLLABORATION FOR PUBLIC HEALTH RESEARCH AND POLICY (SCPHRP), 2008, has £3.5m of funding over five years from the CSO and the MRC. http://www.mrc.ac.uk/Ourresearch/Unitscentresinstitutes/UnitCentreDetails/MRC006602 THE DH POLICY RESEARCH PROGRAMME The Department of Health commissions immediate policy related research across the full remit of the DH, including public health, NHS policy and adult social care. It funds approximately 300 policy-related research projects at any one time. Over the past ten years the PRP has played a leading role in developing the evidence base in a number of high policy priority public health areas including air pollution, antimicrobial resistance and healthcare associated infections. It is practically “divorced” from the other PH research funders, whose commissioning is not related to policy, but to evidence gaps in practice and practitioners on the ground. http://www.dh.gov.uk/en/Aboutus/Researchanddevelopment/Policyresearchprogramme/DH THE PUBLIC HEALTH RESEARCH CONSORTIUM, PHRC, led from the University of York, is funded by the Department of Health Policy Research Programme to strengthen the evidence base for interventions to improve health with a strong emphasis on tackling socioeconomic inequalities in health. It brings together senior researchers from eight universities, a survey research agency, a children's charity and a regional Public Health Observatory, and includes expertise in public health, social epidemiology, sociology, survey and evaluation research, social marketing and health economics. http://www.york.ac.uk/phrc/overview.htm THE HEALTH PROTECTION AGENCY, HPA (http://www.hpa.org.uk/) will become the Public Health England lead from 2012. THE THIRD SECTOR There are more than a hundred health foundations / charities, contributing approximately one third of all public expenditure on medical and health research in the UK. The Association of Medical Research Charities, AMRC (http://www.amrc.org.uk/home) is a membership organisation of the 125 leading health research charities in the UK. It aims to support the sector’s effectiveness and advance health research by developing best practice, providing information and guidance, improving public dialogue about research and science, and influencing government. AMRC charities has contributed over £1 billion in 2010-11 to medical research. Examples of large scale foundations/charities, funding public health research, are: The Wellcome Trust (http://www.wellcome.ac.uk/ ) is an independent scientific foundation with an endowment originally gained from the Wellcome vaccines and pharmaceuticals


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company. It supports biomedical research and the medical humanities and also addresses public engagement, education and the application of research to improve health. The British Heart Foundation, BHF (http://www.bhf.org.uk/) and Cancer Research UK (http://www.cancerresearchuk.org/) are charities, funded through public fund-raising. The King's Fund (http://www.kingsfund.org.uk/ ) is an analysis and policy organisation supported by endowment (originally from public subscription) and charitable activities. It supports projects that can improve the health system in England, particularly broader services (such as primary care, palliative care, maternity care), and policy fields such as quality and workforce planning. The Nuffield Trust (http://www.nuffieldtrust.org.uk/ ) for Research and Policy Studies in Health Services is an independent charitable trust originally endowed by Viscount Nuffield. Its mission is to promote independent analysis and informed debate on UK healthcare policy, with a focus on efficiency, commissioning, the organisation and delivery of care, competition, and international comparisons in healthcare. The Health Foundation (http://www.health.org.uk/ ) is an independent charity endowed from the sale of Private Patients Plan Healthcare that works as a catalyst to improve the quality of healthcare across the UK. PH OBSERVATORIES, PHOs (http://www.apho.org.uk/) are at the very heart of public health policy and practice, producing information and intelligence on people's health and health care for researchers, practitioners, commissioners, policy makers and the wider community. There are 12 PHOs working across the five countries and their national organisational arrangements vary. In England the Network PHOs (formerly the Association of PHO, APHO) brings together nine English PHOs collaborating on an agreed national work plan. Each PHO has a policy lead area, e.g. alcohol, mental health etc. ScotPHO is a collaboration of key intelligence organisations, led by the Information and Statistics Division (ISD) and NHS Health Scotland; Public Health Wales Observatory is an NHS organisation; Ireland and Northern Irelands Population Health Observatory (INIsPHO) is unique, covering both the Republic of Ireland and Northern Ireland. As discussed during the National Meeting, PHOs are not immediately recognised as providers of PH research (in its narrow scientific sense). However their role and importance in data mining and intelligence is vital for any basic or applied PH study. It can be argued that here the distinction between PH practice and research almost disappears as evaluation of real life policies and programmes (‘natural experiments’ in local setting) is even more meaningful for improving population health (local action and impact assessment) than university ‘scientific experiments’. Thus PHOs appear to be not only a source of information but a reference point for communication and collaboration between PH researchers and policy makers. This is even more relevant on a European level where the collection and analysis of any PH information is still a challenge and is considered one of the priorities for the future. UK PHOs are also involved in EU and WHO platforms and projects. UNIVERSITIES undertake a high proportion of the public health research in the UK. Around thirty universities have medical schools which each include a department of public health (or equivalent) with roles of teaching and research. Other health-related disciplines, including nursing, health sciences, psychology and sociology, are taught across the 100 UK universities. Most universities also have postgraduate courses for Masters and Doctorates, and compete for open awards in public health research.


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PUBLIC AND PATIENT INVOLVEMENT (PPI) IN PH RESEARCH PPI has been identified as one of EU priorities, bringing research closer to the public. UK has made steps in this direction as well, involving representatives of patient and public organisation in funders’ boards, project research groups etc. The UKCRC Board Subgroup for Patient and Public Involvement was established to oversee and monitor the implementation of the UKCRC Patient and Public Involvement Strategic Plan 2008 – 2011. From January 2010 INVOLVE leads on patient and public involvement activities for the UKCRC. INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few Government funded programmes of its kind in the world. Another good example is UNTRAP (University/User Teaching and Research Action Partnership), a partnership between users of health and social care services and carers between the University of Warwick and the NHS. THE NATIONAL PUBLIC HEALTH ASSOCIATIONS The Faculty of Public Health has been at the forefront of the development and transformation of the public health profession, keeping and promoting the highest possible standards of professional competence, incl. research skills, and practice in the UK. Its Research Committee serves as a forum for distinguished PH scientists, dealing with PH advocacy. Its International Committees is responsible for the international, incl. European, relations of the FPH. The Society for Social Medicine has been specifically focused on the advancement of academic social medicine, primarily in the research field. To achieve its objective, the Society holds an annual scientific meeting, and one or two thematic meetings each year. It also maintains a website, distributes a newsletter, and responds to consultation documents. The Society is a member of the International Epidemiological Association's European Epidemiology Federation.

1.4. EVALUATION OF PH RESEARCH A significant body of evidence already exists to show that PH interventions work and most of them are cost-effective. However their outcomes take usually long time and their short-term benefits are relatively small compared to clinical ones, thus becoming unattractive to politicians and industry. Another problem, mentioned above, is the insufficient translation and implementation of research findings into PH policy and practice. Thus, the impact of many PH studies remains unclear. Moreover, all changes in population health, PH policy and practice are usually resulting from a number of different research subjects and interventions. And finally, the complexity and variety of the PH research landscape allows for increasing number of different studies, which are not easily accessed from all researchers and the public. These issues were also discussed during the UK National Meeting, identifying the need for a PH research register - a single database of studies to be collected and accessed. There is also an urgent necessity for high quality research methods to better explain the relationship between research and impact. One example of implementation of PH research into policy are the NICE guidelines, however it’s difficult to determine how many of these and to what extend are they used in practice. Another way would be to estimate the spending for and outputs from the research through the CSR. Answering this challenge, the MRC has launched an initiative to identify rigorous, quantitative and qualitative methods to analyse the contribution research makes towards economic growth and wider societal impact. PHIRE – Public Health Innovation and Research in Europe

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The report “Medical Research: What's it worth?” estimated the economic benefits from medical research in the UK. The work demonstrated that the health (using quality adjusted life years) and economic (GDP) gains to the UK attributable to public and charitable funding of research (and 'spillovers' to the private sector) represent a substantial rate of return. The researchers estimate that the time lag between research expenditure and eventual health benefits is around 17 years. The study raises a number of questions about how to assess, for example, the economic impact of non-disease-specific research, the impact of international research on the UK, and the time lag between research the development of treatments. Some measurable PH research outputs: 1. Scientific publications - used for evaluating quality of research (through REF), but little relevance to policy and practice; 2. Publication of policies and guidelines (NICE, DH, LAs etc); 3. Population health and wellbeing indicators (health intelligence)

1.3. UK HEALTH RESEARCH STRATEGIES AND REPORTS Strategies UK Science and Innovation Investment Framework (SIIF), 2004-2014, published in 2004 set out a long-term vision for UK science and innovation, aiming for public and private investment in research and development to reach 2.5 per cent of GDP by 2014. http://www.vitae.ac.uk/policypractice/201901/Science-and-Innovation-Framework-2004-2014.html The English National Health Research Strategy “Best research for best health”, 2006, aimed to support the nation’s health and wealth, as set out in the SIIF 2004–2014, focus on quality, transparency and value for money; respond to changes in society and the environment; and respond to the challenges in the current system for applied health research. http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH_4127127 UKCRC Public Health Research Strategic Planning Group published in 2008 ‘Strengthening Public Health Research in the UK’ www.ukcrc.org/index.aspx?o=1529 The English White Paper “Healthy Lives, Healthy People: Our Strategy for Public Health in England”, 2010 sets out the proposed new public health service. http://www.dh.gov.uk/en/Publichealth/Healthyliveshealthypeople/index.htm “Research Changes Lives”, MRC strategic plan for 2009-14 proposes better health and wellbeing through developing prevention interventions, new treatments for diseases, producing wellfounded policy guidance for research governance and ethics, and maintaining excellence in the basic research that underpins these activities. http://www.mrc.ac.uk/About/Strategy/StrategicPlan2009-2014/index.htm Scottish CSO’s 5-year health research strategy “Investing in Research: Improving Health”, 2009, proposes that returns on the investment of public money will be measured in these terms of patient benefit and improving population health. Scotland became an OSCHR partner during 2008 and the research strategy reflects that participation. http://www.cso.scot.nhs.uk/Publications/research.pdf PHIRE – Public Health Innovation and Research in Europe

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The Northern Ireland 2007-2012 Strategic Plan “Research for Health and Wellbeing” has five strategic priorities. http://www.dhsspsni.gov.uk/r_d2007.pdf The Economic and Social Research Council strategic plan 2009-2014 “Delivering impact through social science” identifies seven areas of strategic challenge for economic and social research. http://www.esrc.ac.uk/strategicplan/ The HPA's Research Strategy 2005-10 “Providing the Evidence Base for Public Health” is a five year research and development strategy report, outlining the main functions and research and development capabilities at the Health Protection Agency. The main R&D themes are relating to infectious diseases, environmental hazards and radiation. http://www.hpa.org.uk/Publications/CorporateReports/CorporateAndStrategicPlans/0510Pro vidingtheEvidenceBaseforPublicHealth/ Innovation, Health and Wealth, Accelerating Adoption and Diffusion in the NHS, DH, 2011. The new Life Sciences Strategy and a review of Innovation in the NHS seeks to create a system for innovation that continually scans for new ideas, and takes them through to widespread use – including electrical devices and communications. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuida nce/DH_131299 The Government’s Plan for Growth, HM Treasury and the Department for BIS, March 2011, presenting the UK plan for sustainable, long-term economic growth. One proposal is a new health research regulatory agency for clinical trials. http://cdn.hm-treasury.gov.uk/2011budget_growth.pdf Other public health areas include the Strategy for Public Health Infection Research, 2010. http://www.nihr.ac.uk/files/pdfs/Public%20Health%20Infection%20Research%20Strategy.pdf

Reports NIHR Annual Reports. http://www.nihr.ac.uk/publications/Pages/default.aspx MRC Delivery Plan, 2008/09–2010/11 http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC004269 The Foresight Programme. http://www.bis.gov.uk/foresight “Medical Research: What's it worth?” Estimating the economic benefits from medical research in the UK, 2008. http://www.wellcome.ac.uk/About-us/Publications/Reports/Biomedicalscience/WTX052113.htm The Comprehensive Spending Reviews (CSR) - Spending Review 2010 ensures the UK remains a world leader in science and research”, maintaining the science budget at £4.6 billion. http://www.hm-treasury.gov.uk/spend_index.htm


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Supplement 2: UK public health programmes and calls, 2010 UK PUBLIC HEALTH PROGRAMMES AND CALLS, 2010 The following programmes and calls were described in the report for PHIRE phase I: http://www.fph.org.uk/uploads/PHIRE_WP5_PH%20research%20calls_UK_2010.pdf 1. Health and wellbeing, ESRC, £13m (€15m) http://www.esrc.ac.uk/_images/Annual%20Report%2009-10_tcm8-13375.pdf http://www.esrc.ac.uk/publications/annual-report/index.aspx 2. Lifelong Health and Wellbeing (LLHW) programme, MRC & DH, around £10m (€12m) http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007851 3. Methods research for complex interventions, MRC & NIHR, no specific funds limit http://www.mrc.ac.uk/Fundingopportunities/Highlightnotices/index.htm 4. Patient Reported Outcome Measures (PROMs), MRC, no specific funds limit http://www.mrc.ac.uk/Fundingopportunities/Highlightnotices/PROMs/MRC005962 5. Calls under the Population and Systems Medicine Board, MRC, no specific funds limit http://www.populationhealthsciences.org/mrc-strategic-priorities.html http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007851 6. Health Technology Assessment, NIHR, £40m (€45m) http://www.hta.ac.uk/funding/troubleshooting/index.html#hta67 7. Methodologies Research Programme, MRC & NIHR http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/MRP/MRC004214 8. Programme grants for applied research, NIHR, £29m (€35m) http://www.ccf.nihr.ac.uk/PGfAR/about/Pages/default.aspx 9. Research for patient benefit, NIHR, £12m (€14m) http://www.ccf.nihr.ac.uk/RfPB/Documents/RfPBReview.pdf 10. Public Health Research programme, NIHR, £8m (€10m) http://www.phr.nihr.ac.uk/ 11. Service Delivery and Organisation, NIHR, £6.6m (€8m) http://www.sdo.nihr.ac.uk/aboutthesdoprogramme.html 12. School for Primary Care Research, NIHR, £3m (€3.5m) http://www.haps2.bham.ac.uk/primarycare/nspcr/ 13. Research capability programme, NIHR - 10 Pilot studies were commissioned in 2010. http://www.connectingforhealth.nhs.uk/systemsandservices/research http://www.scot-ship.ac.uk/sites/default/files/PDFs/peter-knight-slides.pdf There are also numerous programmes and calls, announced by the third sector (the Wellcome Trust, Cancer Research UK, the British Heart Foundation etc) several times throughout the year. Most of them are focusing on specific health topic (e.g. cancer or cardiovascular research and prevention) and include also clinical research.


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Supplement 3: PHIRE tracer projects in the UK PHIRE is designed to determine the uptake of European health projects within member states. The European Public Health Association has around 20 thematic ‘Sections’, and seven Sections agreed to participate in PHIRE. They were asked to identify one (or more) projects of relevance to them funded by the Health Programme between 2003 and 2005, and therefore all finished by 2009. Six Sections identified one project, one Section identified two projects. The Sections have an electronic list of ‘members’ who have selected themselves (usually through the annual EUPHA conferences, where the Sections also lead sessions). Lists are between 500 and 1000 members. The Sections were asked to identify a respondent in each country to provide information on the uptake of the project in their country. The projects also had national members, but the purpose of the national survey was to determine what had happened subsequently to the end of the project – ie, did the project influence national knowledge, policy or action in any way. The Sections did not achieve full coverage of all countries, if they lacked respondents, but reports were available for each project overall. In the second phase of PHIRE, the reports on each project for a single country are brought together. In the UK seven reports on five tracer projects were provided by Section members. UK was involved directly as a partner / collaborator in all of the eight projects. The Section reports for the UK are summarised below. The PHIRE tracer projects report can be found at: http://www.fph.org.uk/uploads/PHIRE_WP4_tracer%20projects_UK_2011.pdf I. VENICE - VACCINE EUROPEAN NEW INTEGRATED COLLABORATION EFFORT EUPHA Section on Public health epidemiology. VENICE had collaborators/partners/expertise from 29 countries, incl. UK. No country informant (CI) from the UK has answered the web-based questionnaire. Aim: to collect and share information on the national vaccination programs and to build up a common knowledge in order to improve the overall performance of the immunisation systems. A large variation in the surveillance system in participating countries indicates a need for discussion in harmonisation in the epidemiological surveillance across countries. II. CHOB - CHILDREN, OBESITY AND ASSOCIATED AVOIDABLE CHRONIC DISEASES EUPHA Section on Food and Nutrition. 24 partners from 20 countries were represented in the project as collaborators / partners / expertise, including UK. Questionnaire was obtained from the UK CI. Aim: to tackle the obesity epidemic among children and young people. The UK focused on unhealthy food and drink and access to low cost high quality food regardless of socio-economic circumstances; supporting the children’s food bill; a national campaign for statutory regulation to control the marketing of unhealthy food to children and to shift nutritional criteria for foods promoted to, or served to children; NHF’s campaign. III. URHIS I - EUROPEAN SYSTEM OF URBAN HEALTH INDICATORS I EUPHA Section on Urban Public Health. EURO-URHIS I had collaborators/partners/expertise from 30 countries, including UK. URHIS I questionnaire was obtained from 13 countries, including UK.


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Aim: to develop a comprehensive urban health information and knowledge system, through indicators for urban health - identified 45 indicators. In the UK, Birmingham has no indicators for COPD, mental health, cannabis use, noise or damp housing; Cardiff has no indicators for nonBritish migration, cannabis use, noise or health education programmes; Glasgow has no indicators for poverty, chronic illness, asthma, COPD, depression or noise; Manchester has no indicators for psychological distress, green space or pollution. IV. HA - HEALTHY AGEING and V. EAAD - EUROPEAN ALLIANCE AGAINST DEPRESSION EUPHA Section on Public Mental Health. HA & EAAD had collaborators/partners/expertise from 11 / 14 countries, including UK. No CI from UK has answered the two web-based questionnaires & results were not disseminated in the UK, according to the final reports. Aim: to promote healthy ageing (HA), further developed to promote the care of depressed patients and prevention of suicidal tendency (EAAD). VI. CSAP - CHILD SAFETY ACTION PLANS, Phase I EUPHA Section on Injury Prevention and Safety Promotion. CSAP had collaborators / partners / expertise from 25 countries, including UK. CSAP questionnaire answers were obtained from 18 countries, incl. UK. Aim: to contribute to reducing child and adolescent injury across Europe through development of national action plans. Six countries including Scotland was able to organise a government endorsed child safety action plans (CSAP). In the UK more can be done in evidence-based policy introduction, implementation and enforcement to support prevention of cycling injuries, drowning, falls, poisonings, burns and scalds and choking/strangulation. There is a need to support and fund injury prevention measures in a combined approach of education, engineering and enforcement of standards and regulations. Wales: Whilst there are arguably no dedicated budgets for child accident prevention, research and capacity building (road safety being the exception), it is recognised the existing support and funding given by the Welsh Assembly Government. This report also recognises that progress of child accident prevention through enforcement and legislation may be hindered due to current levels of legislative powers. VII. EUCID - EUROPEAN CORE INDICATORS IN DIABETES MELLITUS EUPHA Section on Chronic Diseases. EUCID had collaborators/partners/expertise from 18 countries, including UK. In total 15 countries have responded the questionnaire, including UK. Aim: to collect and compare data about risk factors for diabetes, complications and quality of care indicators in Europe. Data source vary and is difficult to compare directly to each other. In England Information is missing on retinopathy, blindness, cholesterol, triglyceride, mortality) all of them in age bands. Out of 6 indicators, information about HDL-cholesterol is not available, replaced by Creatinin. All indicators are measured, apart from alubumiuria; 40% of tested diabetic population had abnormalities in 3 indicators. Scotland: Information on all 30 Indicators by age bands were provided. The Tayside database is one of the main partners and contributors of Better Indicators through Regional Outcomes (BIRO). All 6 indicators are well measured among diabetic population. 40% of tested diabetic population showed abnormality in HbA1c, HDL cholesterol, and BMI.


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VIII. ENHIS - IMPLEMENTING ENVIRONMENTAL AND HEALTH INFORMATION SYSTEMS IN EUROPE EUPHA Section on Environment related diseases. ENHIS had collaborators/partners/expertise from 11 countries, including UK. Answers to the questionnaire, regarding ENHIS was obtained from 10 EEA countries, including UK. Aim: to reduce hazardous exposures and their health effects reliable information on population health. Fact sheets by priority issues presented. In the UK: dampness has not been changed over years (20%); weekly intake of cadmium in food (adults) is highest of all (80 micro gram); estimated proportion of dwellings with radon levels ≥200 Bq.m-3 is 0.5% in UK, ≥400 Bq.m-3 is 0.1, 2005. Work injuries in children and young people between 18-24 year old - incidence is decreasing from 2/100,000 to 1/100,000 in UK.


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TRACER PROJECTS - UK IMPLEMENTATION AND IMPACT (VENICE, HA and EAAD did not receive UK-specific reports – questionnaires not filled in) Questions

Relevance of topic before the project started in 2004 Description

To what extent was this problem addressed – what was already done?

CHOB

URHIS I

CSAP

*Relevant to a great extent. In England the issue of overweight and obesity in children is of growing concern. Currently 16% of girls and 15% of boys aged 2yrs to 15yrs are classified as obese. Data from 1995 to 2001 shows that mean BMI increased among both boys and girls aged 2-15 years yet between 2001 to 2009 there was no significant change.

*Do not know the relevance. The first time I heard about this project was the request to complete this questionnaire.

*Relevant to some extent. The CSAP opportunity came along at exactly the right time for child safety in Scotland. Lobbying work was already carried out in Scotland (for many years)

*Addressed to some extent. *Already done as the forms of: National policy on free school meals for low-income households. Welfare food scheme, Clinical weight management services within the NHS

Do not know.

Funding has been provided by the Scottish Government for many years for RoSPA to carry out accident prevention activities in both Road Safety and Home Safety.

*Addressed to some extent. The Scottish Government highlighted child injury prevention in its White Paper on Health and injuries were viewed as a public health issue.

EUCID (Italics: Scotland, Other: England) *Relevant to a great extent. Having been reporting on local, regional and national diabetes outcomes in Scotland since 1995. *Relevant to a great extent. In England we have high quality datasets on the management of diabetes. However, we lack European comparisons, which would add value considerably. * Relevant to a great extent. The SWEET project was one such example of activities proving the EUCID whose main aim was to promote secondary promotion of prevention of diabetes. *Addressed to a great extent. Reporting on local, regional and national diabetes outcomes in Scotland since 1995 via the DARTS project and subsequently SCI-DC. *Addressed to some extent. Within the NHS in England there has been investment in the National Diabetes Information Service (NDIS). This is a partnership of five national organisations.

ENHIS *Do not know the relevance. I have been given no information about it Please note however, I have just completed at the request of the WHOUNEP office in Athens, an Implementation Plan for the management, control and prevention.

*Addressed to great extent. Comprehensive Faculty of Public Health, and Chartered Institute of Environmental Health plans are in place together with relevant industry.

*Addressed to a very great extent. PHIRE – Public Health Innovation and Research in Europe

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Dissemination of results (description) and information reach

*Disseminated via reports & international networks. Personally I am aware off and have access to the report, ‘The Marketing of Unhealthy Foods to Children in Europe'. *Information reached to: government, universities, and charities such as British Heart Foundation & National Heart Forum

*Little

impact

on

Not answered.

*Do not know about


*Disseminated via reports, brochures, websites, international meetings, national conference, national & international networks, mass media, cooperation with other researchers, and formation of a project group, CSAP and newsletters by RoSPA or CAPT etc. A Child Safety Strategy for Scotland was produced and circulated to all contacts with a potential role in Child Injury Prevention in Scotland. As project leader in Scotland, Mike Hayes of CAPT and myself presented on the CSAP in Scotland at various events, conferences, seminars, and workshops. The CSAP brochure was distributed widely in Scotland. Press releases were issued by RoSPA at various opportunities to support both ECSA releases and at key developmental stages in the CSAP process. Regular progress meetings were held with Scottish Government civil servants to update on CSAP.  All Health Boards and local authorities in Scotland were given CSAP information via newsletters and direct mailing. The general population was reached through national press releases and TV and radio interviews. TV and Radio stations and the national and local newspapers were reached through RoSPA press releases. *Considerable impact on

*Via reports, website, international meetings, national networks, The Scottish Diabetes Survey Monitoring Group, and he Scottish Diabetes Research Network.

Not answered.

Each year, Scotland publishes its "Scottish Diabetes Survey" which compares diabetes outcomes across all 14 Health Board areas in the country. Information reached to government, health care providers, professional organisation, universities, local authorities, and other research organisations, but not to public. *Via reports, websites, national networks, books, brochures, peer reviewed journals, conferences, education training, national/international networks, mass media, cooperation with other researchers, and websites. Information reached to government, health authorities, health care providers, professional organisations, local authorities, universities, other research organisations, general population, and non-governmental organisation (Diabetes UK)

* No impacts on government, health care

*Do not know about 33

Impact on: Government Health authorities Health providers Professional organisations Local/regional authorities Universities & other research providers NGOs General/target population Mass media Commercial sector Other

government, national health authorities, health care providers or local/regional health authorities, universities, other research organisations or nongovernmental organisations. In relation to policy reform evidence from the project may have been used to inform regulation of high sugar, salt and fat foods being prohibited from advertising. In relation to regulation again evidence from the project may have informed the consultation process and response to the government proposal. The evidence from the project continues to support the evidence base for Heart of Mersey's objective to protect the health and well being of children and youth. Little impact on general public, trading, mass media or other authorities.

impacts.


governments in terms of knowledge, awareness, policy, but no impacts on law changes/regulations. Government officials were regularly updated with the progress of CSAP in Scotland. This was done through meetings and via circulation of the CSAP for Scotland. It was clearly communicated that the Scottish Government included child injury prevention as one of the four key priorities for its new approach to child environment. Likewise, the interest in progressing a national data collection system in Scotland, was raised because of the focus provided by CSAP  New departments within the Scottish government are taking an interest in Child Safety and this has been shown by increased funding from the Community. *Considerable impacts on health authority in terms of data collection, but little impacts on funding, and no impacts on laws change/regulation. *Limited impacts on health care provides in terms of projects and research initiated. *Impacts on professional health care providers are unknown. *Considerable impacts made on local authorities in raising their awareness/knowledge.

providers, health authorities, local authorities, mass media, or trading. Little impacts on universities, professional organisations in terms of knowledge and exchange of best information. Impacts on other organisations or non-governmental organisations are not known. No impact. Needs more focus on Scottish Diabetes Survey.

impacts.

*Considerable impacts on government in terms of knowledge, but little impacts on policy no impacts on regulation change. Little impacts on health authorities in terms of knowledge and regulation change, and no impacts on policy change. Little impacts on health care providers or professional organisations in terms of knowledge, policy/routines. Impacts on universities or research organsations are not known. Little impacts on non-governmental organisations in terms of knowledge. No impacts on general public or mass media. Impacts on the target population are unknown. The final report was circulated to national partners, with the expectation that they would cascade to colleagues locally/regionally. The final report was not widely circulated to the general population, although it was made available through a publically available web portal.

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Some local authorities have included 'child safety', 'home safety', 'road safety' and/or 'fire safety' as key priorities for local communities. *Little impacts on universities in terms of knowledge/awareness and increased funding. *Impacts on other research organisations are not known. *Made limited impacts on local authority in raising their awareness/knowledge, increased funding. Initial funding allocated to RoSPA to run a pilot blind cord safety campaign. The project was well evaluated and further funding was secured from the community. The Scottish Government is now a major funder of CAPT's (UK) Child Safety Week to ensure adequate coverage in Scotland.  Government funding continues to be allocated to RoSPA whose work with CSAP has helped to keep it on the political agenda. *Impacts on general or targeted populations are not known. *Limited impacts are made on mass media as shown in the amount of media coverage. Media contacts are aw are of CSAP and an increase in frequency of child safety related articles has been noticed. *Limited impacts were made on traders in terms of knowledge and PHIRE – Public Health Innovation and Research in Europe

*High impacts on government in terms of knowledge, policy and considerable impacts on regulation changes and projects initiated. High impacts on national health authorities in all aspects (knowledge, policy, regulation changes, projects initiated, data collection surveillance, funding, and increased awareness and good practice in mental health care). High to considerable impacts on health care providers, as seen in the Diabetes UK and The SWEET project for children and young people living with diabetes. High to conservable impacts on professional organisations. High impacts on local organisations in all aspects (knowledge, policy, data collection, projects initiated, funding). Considerable impacts on universities. High impacts on other research organisations (knowledge, funding, projects initiated, education policy). High impacts on non-governmental organisations, an example given by the SWEET project. High impacts on general population High impacts on the targeted population, mass media, and trading. Coupled with healthy lifestyle and health eating campaign, there has been a general increase in the uptake of healthy eating options including exercises. Pharmaceutical companies are providing support for people with diabetes through provision of training to 35

Not answered

Do not know.

Health benefits

policy. Manufacturers of blind cords and related safety devices running own campaigns.

professionals and support of campaign awareness.

The long-term benefits are difficult to attribute to being as a direct result of CSAP.

As explained above, Scotland has an advanced information technology system allowing population-based regional and national reports to be created.

Not applicable

Unfortunately the quality of the data from partner countries was not always robust so it was difficult to make appropriate comparisons.

Not answered.

Not answered

None aware of.

Negative outcomes

There is going to an increased awareness of the disease and its associated burden, prevention and effective management on a long-term basis. Data were significantly retrospective and may not have had the same impact if the report had been more contemporary.

Not applicable.

Unfortunately the quality of the data from partner countries was not always robust so it was difficult to make appropriate comparisons.

Not answered.

Not answered

Other


Not answered.

It would have been much better if it had been initiated at a local level rather than coming from overseas making its implementation more difficult. Most of the impacts above have happened in Scotland independent of the EUCID project. Already having these initiatives allowed us to contribute to EUCID. (England) Not answered

Not answered

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Factors hindering the project impact

Not have high priority, current rule/regulation, and stakeholders counteracts impact.

Not answered

The only thing lacking was funding to employ someone to specifically take forward CSAP in Scotland. Although organisations already focused on child safety.

Political will to regulate on this particular issue in the UK further than existing regulation. Reliance on voluntary action and codes of practice from industry.

Factors facilitating the project impact

Sufficient financial resource, having dedicated persons, support from stakeholders, and attention in media.

Do not know

Not answered

Do not know

Further communication and spread

Not answered

Not answered

Other


*Established national /international networks and adequate infrastructure (re: Child Safety Champions). Re: 'Dedicated' persons: If this refers to specific people employed to take the project forward then the answer is 'no', this was not a factor facilitating impact. *At limited extent. Discussions at this stage are mainly opportunistic. Likewise TACTICS is currently being highlighted to ensure that all practitioners and policymakers are aware the process is going to continue.

Difficult to confirm direct cause and effect of CSAP as raising awareness of the challenges has always been provided by RoSPA

*Lack of infrastructure. Scotland, while happy to contribute to the EUCID project, was already advanced in the development of diabetes networks and shared datasets. *Lack of infrastructure. A major hindering factor related to the quality of the submitted data and the lack of potential comparators. *Lack of infrastructure. There is not much published literature specifically attached to UK on the EUCID. *The topic already had a high priority & established national networks. Diabetes has been identified as a priority condition within Scotland and has a mature infrastructure facilitated by regional Managed Clinical Networks. *The topic was already a high priority in the country & established networks. *Not at all. EUCID data was from 2006 and as such is no longer suitable for planning purposes. The Scottish Diabetes Survey contains more current data. *Not at all. *Unknown. From current projects information on results is being effectively disseminated through research, the office of the National Statistics, NICE and others. None.

Not answered

Not answered

Not applicable.

Not answered

*England (Not answered)

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and other agencies in Scotland. The impact is clearly seen at Scottish Government level as they remain keen to support the continuing process into TACTICS and RoSPA's grant funded work.


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