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L’utilité de ce genre d’institutions est incontestable. Car le monde moderne est sans cesse confronté à des innovations, médicales ou autres, qui s’appliquent à l’homme ou à son environnement proche. Ce lieu est donc nécessaire pour préparer la matière intellectuelle qui sera ensuite transférée aux citoyens afin que ceux- ci puissent se prononcer quant à la légitimité de ces innovations.

 

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4 - 6 novembre 2015

[En]Countering Invisibility: Critical perspectives of Disease, Health Advocacy and Equity

Organisateurs:

It is a truism that some diseases are more visible than others in policy and media circles; the complex reasons underpinning this situation are less well known. Munificently funded eradication programmes, such as the one currently ranged against polio, ensure that the disease remains high on policy and media agendas. Such a trend is driven forward by relatively well-resourced communications departments and policies, which go out to foster effective frameworks for knowledge transfer between project managers, international and national agencies, the press and, not least, funding bodies. In other cases, national and international media are the drivers of processes that make diseases highly visible, especially during instances where newly emergent diseases suddenly cause unexplained deaths in nations, and are seen to travel regionally and internationally (the dramatic outbreaks of Severe Acute Respiratory Syndrome, the Middle East Respiratory Syndrome and Ebola Virus Disease are cases in point, where significant scientific and material resources were mobilised in an effort to identify and deal with the threat to human life). The heroic tropes that often accompany the narratives of visibility of some diseases should not come as a surprise; this is perhaps a necessary symptom of the convergence of specific political and financial interests, which forms the basis of international, regional and national alliances that are capable of shaping the mobilisation and use of health budgets. The proposed workshop will examine the flip-side of the processes that make some diseases highly visible – the many political, economic, institutional, social and cultural factors that combine to promote the relative invisibility of other diseases, despite their widespread prevalence and capacity to inflict high human costs. The precedence given in recent decades to disease control and eradication programmes – and, more recently, a global financial crisis – have borne budgetary pressures that have created dramatic hierarchies in resource allocation, especially in nations dependent on foreign aid and overseas technical expertise. These trends were fortified by an almost endless search on the part of alliances of international and national officials for universally relevant policies, which were proposed as solutions for health challenges requiring attention for the sake of the greater ‘public’ good on a general, ‘global’ basis. While this strategy was often successful in mobilising political and financial support, it was generally ill equipped to understand - and deal with – variations in disease ecology and resource capacity across local terrains marked by striking health, infrastructural and economic imbalances. This quest for generalisation, and the almost continual dominance of a relatively small set of ideas, created an atmosphere where myriad differences of opinion in the localities of nations, about the cause of ill health and disease incidence, were either ignored or downplayed. In such an administrative and philanthropic culture, which was sustained by support from different levels of international and national governance, local arguments about the need to counter a host of diseases relevant to their administrative and social contexts were frequently drowned out. It has not always been openly recognised that these trends have contributed to the institutionalisation of health inequities across the world; within developed, less developed and developing countries alike. Discussions about these challenges usually degenerate into politically charged, polemical exchanges. This is a great pity, as a systematic study of disease invisibility and the best means of countering this phenomenon can help create a greater bank of knowledge of the causes of morbidity and mortality across diverse locales, which can then be targeted through locally relevant financial plans, ethical protocols, public engagement strategies and wide-ranging community support (whilst vague and sometime over-generalised notions of community ‘stake-holding’ get a mention in policy declarations, an accurate map of socio-economic and cultural diversities in small national administrative units can prove a much more useful tool for policy design, implementation and evaluation). In the current financial crisis, it is often difficult for international agencies to find resources to carry out such micro-level research and data collection; this is where, we believe, capable and independent academics have an important role to play with the help of global charitable foundations. Large and long-term grants, such as those provided by the Wellcome Trust in the UK, can help develop coalitions of academics, international agency officials and government personnel, who can create knowledge banks that are generally available to all parties interested in improving health conditions, especially amongst the disadvantaged sections of society. Uncovering the expectations and experiences of those whose voice is not generally heard, in administrative circles or societal organisations that blithely claim to represent national interests, can provide invaluable knowledge to us all about disease epidemiology, legal deficiencies in healthcare provision and a host of specific structural problems. This is also information that can become an effective cornerstone of health advocacy and health reform, especially as the WHO once again takes the lead in promoting equitable Universal Health Coverage across the world. The Centre for Global Health Histories at the University of York in UK, which is also the WHO Collaborating Centre for Global Health Histories, seeks to organise this workshop in order to bring a host of experienced academics and policy makers together to consider all these issues. We seek to involve retired WHO officials, who have valuable experience that can be deployed through university- and NGO-based research centres across the world. We also aim to create an international network of academics, which will be able to work with retired and serving WHO officials in the coming years. The goal is to start wide-ranging consultations for the submission of an application for a major Wellcome Trust Strategic Grant, which will have a life of five years and lead to inter-disciplinary research and collaborations in global health histories and research. If this application for workshop support is successful, our meeting will be clearly mentioned in the Wellcome application as the pilot study underlying our research plans. The workshop participants will adopt a critical approach, from a medical humanities and social science perspective. Our aim is to draw in insights provided by a range of academic disciplines, which allow us to study past and contemporary policy trends in all their complexity. Importance will be accorded to studying a great range of societal and administrative responses inside different national contexts, on an independent basis and avoiding any conflicts of interest. Such an exercise can be useful in an era where new ideas for the promotion of universal health coverage, health systems development, sustainable financing, health research, ethical frameworks, financial probity and health equity are being developed in international contexts, proposed to regional and national bodies, and, in some cases, being introduced on experimental bases with little tested knowledge about local challenges. We believe that it is important to discuss the means by which a more accurate map of disease incidence can be created and acted upon. This is a process that necessarily requires the multi-directional transfer of information and ideas, which can allow multiple stakeholders in locales to target different sets of diseases as public health threats. We will use the examples of Sickle Cell Disease in India and South Asia, Leishmaniasis in Brazil and Latin America, TB in the United Kingdom and Europe, and a mysterious new kidney disease reported in Sri Lanka that seems to have resonances in other parts of Asia and Latin America to study the theme of invisibility or neglect of certain health conditions in some depth. In doing this, we will seek to develop – in association with WHO officials and the Head of Public Health England, Professor David Heymann – strategies for countering the resultant problems and better understand why these diseases are neglected in specific national and regional contexts, whilst receiving attention in others. There is, for instance, little recognition of the widespread prevalence of SCD inside Indian and Southern Asia, possibly because it affects disadvantaged and frequently disfranchised tribal and poor rural populations, whose health conditions are rarely studied in a systematic way (there are also a large number of Internally Displaced People in these communities, who migrate away not only from conflict and persecution, but also keep moving in search of employment). The study of migrant health in UK and Europe is an important part of these plans, as this too can reveal different forms and extremes of disease invisibility in a globalising world. SCD, Leishmaniasis and multi-drug resistant TB have all been found to travel across national, regional and international borders, leading to the creation of new disease foci in terrains and neighbourhoods were epidemiological surveillance is weak and health service coverage incomplete. A recent WHO study has linked exposure to agro-chemicals as the cause for new forms of – and as yet undefined – kidney disease in Sri Lanka; disease invisibility in this regard is heavily marked by gender inequalities in locales, as well less than universal agreement about aetiology. We will examine topics such as health financing, health systems development, public health ethics, health equity and communications and public engagement strategies, in an effort to start a process of developing proposals that can be presented to different WHO and government departments (we have connections with the Indian, Brazilian and Sri Lankan health ministries, who will be drawn into our consultations at a later stage, along with the UK’s National Institute for Clinical Excellence and the Wellcome Trust).