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In the context of implementing Horizon 2020 (H2020), the European Union’s Research and Innovation Framework Programme, the EFPC has provided its' comments to the development of the work programme 2018-2020 defining the calls and action that will implement the Framework Programme.
Please find the critical EFPC comments below and attached. The document to which it refers is the report of the Advisory Group (AG) for Horizon 2020's Societal Challenge 1 (on Health, Demographic Change and Well-being) for the programming exercise 2018-2020.
In general we came to the conclusion that the document contains mainly short-sighted visions and opinions and need a lot of re-phrasing for having a useful strategy for 2018-2020.
|Vertical Themes||EFPC Opinion||Rationale|
|1. Personalised medicine||Personalized medicine is a reductionist, biomedicine-focused disease based approach which is an old fashioned approach leading to more health inequalities, escalation of costs and undesired side effects of citizens expecting to become immortal. What we need is a paradigm shift from a disease oriented, reactive approach towards a goal-oriented, proactive approach in which citizens and patients formulate their needs and goals in, terms of quality of life based on well-being and not only the eradication of diseases. Such an approach does not rely on ever great biomedical and pharmaceutial approach, but instead requires careful insights into the impact of prevention and disease treatment on patients' daily lives and on the health systems with which they interact. While omics-based biomarker research is important, the daily lived reality of populations across Europe is that of multiple risk factors and living with multiple, co-existing disease (multimorbidity) which is unlikely to be dealt with by this reductionist approach to understanding disease aetiology and development.||The recent Opinion on primary care, published by the Expert Panel on Effective Ways of Investing in Health of the European Commission , sets the lines for the 21st century blue-print: person- and people-centered care by a team of professionals, an appropriate referral system, starting from primary care as the point of entry for all new health problems and comprehensive payment systems, that stimulate accessibility and quality. An added advantage of a people-centered approach is the role that primary care should take in preparedness to collective threats, such as ecological disasters, epidemics or the prevention of large-scale social conflicts through its contribution to social cohesion. Also presented in the new, dynamic concept of health, as published in 2011 by Huber et al: ‘ How should we define health?’ A narrow biomedical focus on omics-based research does not address the main issues of current health policy, which is attempting to address multiple disadvantage, risk and multimorbidity in the face of ageing populations and austerity. This narrow, biomedical approach will also fail to address the World Health Organization Sustainable Development Goals; Goal 3 addresses healthy lives and the promotion of well-being across the lifecourse, with a particular focus on equity, universal health coverage and access to health for all, irrespective of need. Too great a reliance on personalised medicine will undermine this wider, societal approach.|
|2. Rare Diseases||We acknowledge the need to invest some funding into improving our understanding of rare diseases. However, as long as we, in our well developed societies, are not able to provide high quality care to our citizens with physical and mental health needs, or the many suffering from diseases such as dementia, it feels strange to invest a lot of money into further research for curative solutions for rare diseases without also addressing the wider social needs of such individuals. We suggest it may be better spend our money into the development of more and better education/training of the large numbers of professionals who are needed to take care of the growing number of elderly in our societies. Research for better training methodology and interprofessional collaboration would be much more appropriate.||An important challenge, when it comes to rare diseases is how to avoid 'inequity by disease', an increasing problem, where people with the same functional status have different access to care-packages, according to their diagnosis. This requires a fundamental ethical research.|
|3. Research & Innovation for Infectious Diseases||The biggest challenge here is to deal with antimicrobial resistance, and the need to find new ways of developing e.g. antibiotics and new drugs, as the actual model of privat market approach does not fullfill its societal role (no new antibiotics actually coming on the market).|
|4. Non-Communicable Diseases||Non-Communicable diseases is a term which is misleading as all communicable diseases are leading towards chronic illnesses. Having said this, the focus with chronic diseases should be fully on multi-morbidity and community oriented care. Most patients with chronic diseases - especailly those with multiple diseases - require the horizontal, continous, integrated care provided by primary care/family medicine/general practice. By its nature, such care works across and with specialities, ensuring that fragmentation of care is reduced as much as possible. Chronically ill patients like surviving cancer patients will spend only very little time with hospitals and specialized care and their needs are concentrated on the question: how to live a life of the highest possible quality. In order to reach such quality of life it is crucial to look into how diseases interact and even more, how polyfarmacie makes the quality of life of a patient worse. We need to perform research on how to avoid unwanted curative solutions and keep the intake of medicines low, starting from a paradigm shift from disease-oriented ' towards 'goal-oriented' care, looking at the goals of the patient in terms of quantity and quality of life (see: De Maeseneer et al. Multimorbidity, goal-oriented care and equity. BJGP, 2012). Research is needed to strengthen the role of the Primary Care team in providing the appropriate care to chronically ill patients at community level to enhance the life of these EU citizens.||Avoiding fragmentation of care and ensuring the best possible integration and co-ordination of care across, often multiple, specialities is a key contribution of primary care. This is recognised by a number of key organisations including the World Health Organization in 2008 (Primary Care: Now More Than Ever) and the Expert Panel on Effective Ways of Investing in Health of the European Commission. This is a key requirement in the care of chronic diseases, especially given th clustering and co-existence seen with multiplemorbidity.|
|6. Public Health & Prevention including migration||THE challenge here is health of migrants and refugees. While the title here is "Public health and prevention including migration", we see little evidence of consideration being given to the role and challenges of migration for the health and wellbeing of EU citizens, including those who are the migrants. Key challenges including developing rapid and effective health system approaches to deal with the challenges of rapid and changing migration patterns; dealing with and preventing the development of chronic diseases; dealing with and preventing the development of mental health conditions; addressing issues of sexual abuse and gender-based violence; considering the implications of poverty and marginalisation on already vulnerable populations. More generally, there is a need to move away from individual-level behavourial interventions to population and fiscal-level interventions which address the social determinants of health and to commission research which both tests and evaluates such approaches at the meso and macro-level of health systems. Such work requires collaboration and expertise from the Social Sciences and Humanities. The development and implementation of Local Health Plans is crucial for this, as real health governance instruments, promoting a participated and co-produced process in all of its phases, as well as a social commitment with citizen/migrants participation in an intersectoral basis. At the same time, it is critical to create the mecanisms which can articulate population-based health planning, institutional-based health planning and health services commissioning, bringing to front actual challenges as migration and refugees health and their impact on public health systems.||A move to system-level and fiscal interventions will arguably lead to greater population benefit than a more narrow individual focus based on indivudual-level change and prevention programmes.|
|7. Active & Healthy Aging||While the focus on active aging and the use of ICT and mhealth to support this is welcome, there is a distinct possibility that such approaches will enhance the current "digital divide", with those individuals with better education and economic means most likely to benefit. As before, a greater acknowledgement of the role of primary care in providing care for elderly populations in a holistic would be benefical here and would help to ensure research is conducted in an environment that pays attention to the wider social determinants required for healthy ageing.|
|Horizontal Themes||EFPC Opinion||Rationale|
|I. Big Data||This is a NON-solution to the actual challenges in health. What we need is a comprehensive Primary Care based, integrated approach, with a focus on community health.|
|II. eHealth, mHealth & ICT||The most important challenge is to re-orientate IT towards what matters for patients/peolple. The most important disruptive innovation here would be that the first page of any EPR, would be a page where the patient formulates its goals in terms of quality and quantity of life. The three priorities mentioned in the document are far too narrow. They apply a technical centred solution. But the great potential for eHealth and mHealth lies in ease of communication between patients and clinicians, easier and cheaper because it can be asynchronous, using very widely owned devices and internet. It is particularly important in primary care, where medical help is episodic rather than intensive, and clinicians and patients are remote from each other.||From a SME perspective, this is an area where they can contribute innovative ideas. The low cost of communications can enable easier access for patients to high quality primary care, and reduce the cost of providing the care therefore increasing equity. Primary care is known to provide relatively high value for money (compared with hospitals) and therefore methods of making it more efficient provide a higher gearing for investment. While there may be potential for high tech applications of eHealth, the biggest impacts will come from addressing the whole model of delivery, enhancing the capabilities and values of person-centred relational primary care.|
|III. Integration of Care||In the document this theme is completely focussed on technical and disease oriented solutions and implementation of IT,whereas this has only a small influence on how Integration of Care can be established. The integration of care starts with Human Resources and integration of strong PHC services. Educating and training of staff, facilitating collaboration, proper management of services, etc. This should be the main area of research if it is about integration of care.||The European Union should now consult with the council of ministers of health, in order to engage in a process of exchange of best practices, interprofessional cooperation at all levels, and strengthening primary care in order to reduce the growing social gradient in health . Professional associations at European and national level are challenged to play their pivotal role. In collaboration with national colleges in all European countries such as the national members of the European Federations of Nurses, General Practitioners or Dietitians (EFN, WONCA & EFAD) and similar networks. The Horizon 2020-research program should clearly focus on research projects that start from the needs of patients, with an emphasis on primary care based interventions.|
|IV. Environment and health, green solutions and sustainability including climate change||It is crucial to revitalize the european movement of Healthy Cities, expand their boundaries to more countries and cities within each country (not only capitals or big cities), adressing new goals and including the contribute of more social sectors, as culture and education, while promoting an approach with the municipalities health strategy and the primary health care services network develpment.|
|A. Social Sciences and Humanities, integration, inequalities, migration and ethics||Essential is ethical research on equity in health (care), with special emphasis on vulnerable groups. The unique perspectives which the social sciences and humanities can bring to these research areas and challenges cannot be underestimated. Such approaches broaden the narrow biomedical view which is a feature of the omics-based personalised medicine environment. The social sciences and humanities force us to engage with individuals' and populations' lived experiences and make us address the wider system impacts of the social determinantes of health and the structural impact that racism, inequality and gender-based inequality can impart on lives. As such, social sciences and humanities-based resaerch should be leveraged into all of the vertical research themes; only these approaches will help us to fully develop interventions that can be embedded and normalised at an individual, population and health system level.||WHO Europe "Interim Second Report of the Social Determinants of Health and the Health Divide in the WHO European Region" published in 2011, makes clear the need to understand and act on the wider social determinants of health () in order to improve the health and wellbeing of all EU citizens. Related to this, WHO Regional Office for Europe report in 2011 addresses health inequities relating to migrants and minority ethnic groups, "How health systems can address health inequities linked to migration and ethnicity"|
|B. Sex & Gender differences in medicine||The greatest sex and gender differences lie in the impact of interventions on people's lives and in the inequalities observed in the research workforce, where there is a recognised lack of women in senior academic/research and no recognition - as yet - of gender fluidity and gender neutral role models.|
|C. Commercialisation within “Health, Demographic Change and Well-being”||Commercialisation is NOT a solution for more access and equity in Health Care (see EXPH-opinion on "Access to health Care in Europe"). The outcomes in US are not a model to follow. What is needed in Europe is strengthening a strong European Social Security system, in order to improve care and avoid "push and pull" factors.||See the recommendations in EXPH-opinion (Expert Panel on Effective Ways of Investing in Health of the European Commission) on "Competition in health care" and "Disruptive Innovation". And also the Commonwealth Fund publications making clear that the US has the highest GDP expenses on Health Care and the lowest perceived quality. Page 7 & 8 of the 2013 publication: Thomson et al; International Profiles of Health Care Systems, 2013|
|D. Encouraging stronger and successful involvement of EU-13*||Our Hungarian Advisory Board member listed the following research themes as important to tackle in the coming years: - How to improve the acceptance of PHC at population and health system level? - How to estimate the real needs of population?- How to recognize differences between real health and social needs? - How to demonstrate for politicians/decision makers the usefulness of PHC?|
* Countries which have joined the EU in this millennium, i.e. Bulgaria, Croatia, Cyprus, Czechia, Estonia, Hungary, Latvia, Lithuania, Malta, Poland, Romania, Slovakia and Slovenia.