Suchergebnisse

Ebola virus disease typically only occurs in rural and remote areas among resource-poor populations. Until the large, recent outbreak in West Africa, cases of the illness were a rarity. So the fact that we even have experimental drugs for the disease tells a story about how responses to global health crises are shaped by the social and political interests of the developed world. Major pharmaceutical companies have shown little interest in developing effective treatments for diseases such as this. There's no incentive for the commercial risks of research and companies naturally prefer to focus on diseases that can sustain large markets of wealthy regular users. A similar inattention is suffered by people who have what are collectively known as neglected tropical diseases, which affect about a billion of the world's poorest people. They cause death and ill-health but also entrench social and political disadvantage. Even though most are preventable, and easily treatable with appropriate resources. For those affected, the burden of these diseases, on average, equates to the loss of 56 years of healthy life through early death or chronic disability. Yet, the US Centers for Disease Control estimates that for 50 cents per year per person, the burden of neglected tropical diseases could be eliminated. So it seems a little incongruous that drugs for Ebola virus disease were in development at all, given the relatively small number of cases and the poverty of those most at risk of infection. Let's consider the most advanced drug: ZMapp, which is produced by Mapp Biopharmaceuticals and is the experimental treatment the fuss has been about. The incentive for developing ZMapp was clearly not its broad commercial potential. Instead, it is for developing capacity for biodefence.

BACKGROUND:Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies - pathogen whole genome sequencing (WGS) and Big Data analytics - promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. METHOD:Four community juries were convened in two demographically different Sydney municipalities and two regional cities in New South Wales, Australia (western Sydney, Wollongong, Tamworth, eastern Sydney) to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. RESULTS:Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. CONCLUSIONS:Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected. ; Chris Degeling, Stacy M. Carter, Antoine M. van Oijen, Jeremy McAnulty, Vitali Sintchenko, Annette Braunack-Mayer . et al.

Background: Opportunities for community members to actively participate in policy development are increasing. Community/citizen's juries (CJs) are a deliberative democratic process aimed to illicit informed community perspectives on difficult topics. But how comprehensive these processes are reported in peer-reviewed literature is unknown. Adequate reporting of methodology enables others to judge process quality, compare outcomes, facilitate critical reflection and potentially repeat a process. We aimed to identify important elements for reporting CJs, to develop an initial checklist and to review published health and health policy CJs to examine reporting standards. Design: Using the literature and expertise from CJ researchers and policy advisors, a list of important CJ reporting items was suggested and further refined. We then reviewed published CJs within the health literature and used the checklist to assess the comprehensiveness of reporting. Results: CJCheck was developed and examined reporting of CJ planning, juror information, procedures and scheduling. We screened 1711 studies and extracted data from 38. No studies fully reported the checklist items. The item most consistently reported was juror numbers (92%, 35/38), while least reported was the availability of expert presentations (5%, 2/38). Recruitment strategies were described in 66% of studies (25/38); however, the frequency and timing of deliberations was inadequately described (29%, 11/38). Conclusions: Currently CJ publications in health and health policy literature are inadequately reported, hampering their use in policy making. We propose broadening the CJCheck by creating a reporting standards template in collaboration with international CJ researchers, policy advisors and consumer representatives to ensure standardized, systematic and transparent reporting. ; Rae Thomas, Rebecca Sims, Chris Degeling, Jackie M. Street, Stacy M. Carter, Lucie Rychetnik, Jennifer A. Whitty, Andrew Wilson, Paul Ward, Paul Glasziou

Increasing recognition of interdependencies of the health of humans, other organisms and ecosystems, and of their importance to socio-ecological systems, necessitates application of integrative concepts such as One Health and EcoHealth. These concepts open new perspectives for research and practice but also generate confusion and divergent opinion, prompting new theories, and call for empirical clarification and evaluation. Through a semi-systematic evaluation of knowledge generation in scientific publications (comprised of literature reviews, conceptual models and analyses of communities of practice), we show how integrative concepts and approaches to health evolve and are adopted. Our findings indicate that while their contexts, goals and rationales vary, integrative concepts of health essentially arise from shared interests in living systems. Despite recent increased attention to ecological and societal aspects of health including broader sustainability issues, the focus remains anthropocentric and oriented towards biomedicine. Practices reflect and in turn transform these concepts, which together with practices also influence ways of integration. Overarching narratives vary between optimism and pessimism towards integrated health and knowledge. We conclude that there is an urgent need for better, coherent and more deeply integrative health concepts, approaches and practices to foster the well-being of humans, other animals and ecosystems. Consideration of these concepts and practices has methodological and political importance, as it will transform thinking and action on both society and nature and specifically can enrich science and practice, expanding their scope and linking them better. Transdisciplinary efforts are crucial to developing such concepts and practices to properly address the multiple facets of health and to achieve their appropriate integration for the socio-ecological systems at stake. We propose the term "transdisciplinary health" to denote the new approaches needed.