Data privacy by design: digital infrastructures for clinical collaborations

The clinical sciences have arguably the most stringent security demands on the adoption and roll-out of collaborative e-Infrastructure solutions such as those based upon Grid-based middleware. Experiences from the Medical Research Council (MRC) funded Virtual Organisations for Trials and Epidemiological Studies (VOTES) project and numerous other real world security driven projects at the UK e-Science National e-Science Centre (NeSC – www.nesc.ac.uk) have shown that whilst advanced Grid security and middleware solutions now offer capabilities to address many of the distributed data and security challenges in the clinical domain, the real clinical world as typified by organizations such as the National Health Service (NHS) in the UK are extremely wary of adoption of such technologies: firewalls; ethics; information governance, software validation, and the actual realities of existing infrastructures need to be considered from the outset. Based on these experiences we present a novel data linkage and anonymisation infrastructure that has been developed with close co-operation of the various stakeholders in the clinical domain (including the NHS) that addresses their concerns and satisfies the needs of the academic clinical research community. We demonstrate the implementation of this infrastructure through a representative clinical study on chronic diseases in Scotland

Innovative in silico approaches to address avian flu using grid technology

The recent years have seen the emergence of diseases which have spread very quickly all around the world either through human travels like SARS or animal migration like avian flu. Among the biggest challenges raised by infectious emerging diseases, one is related to the constant mutation of the viruses which turns them into continuously moving targets for drug and vaccine discovery. Another challenge is related to the early detection and surveillance of the diseases as new cases can appear just anywhere due to the globalization of exchanges and the circulation of people and animals around the earth, as recently demonstrated by the avian flu epidemics. For 3 years now, a collaboration of teams in Europe and Asia has been exploring some innovative in silico approaches to better tackle avian flu taking advantage of the very large computing resources available on international grid infrastructures. Grids were used to study the impact of mutations on the effectiveness of existing drugs against H5N1 and to find potentially new leads active on mutated strains. Grids allow also the integration of distributed data in a completely secured way. The paper presents how we are currently exploring how to integrate the existing data sources towards a global surveillance network for molecular epidemiology.Comment: 7 pages, submitted to Infectious Disorders - Drug Target

Co-innovation: the future of telemedicine in developing countries

Telemedicine which has been widely adopted in developed countries to reach all its citizens irrespective of their location is only being used for education purposes or disaster relief in developing countries. Since developing countries already suffer inadequate healthcare provision especially in remote areas, it would be essential to implement telemedicine practices for daily clinical uses rather than education use. This research argues that to understand the future of telemedicine in developing countries, both well-established technology innovations adoption factors as well as co-innovation factors should be addressed. In the context of healthcare provision, we propose a conceptual framework that integrates the healthcare resources and the organisational affiliations in co-innovation

E-infrastructures fostering multi-centre collaborative research into the intensive care management of patients with brain injury

Clinical research is becoming ever more collaborative with multi-centre trials now a common practice. With this in mind, never has it been more important to have secure access to data and, in so doing, tackle the challenges of inter-organisational data access and usage. This is especially the case for research conducted within the brain injury domain due to the complicated multi-trauma nature of the disease with its associated complex collation of time-series data of varying resolution and quality. It is now widely accepted that advances in treatment within this group of patients will only be delivered if the technical infrastructures underpinning the collection and validation of multi-centre research data for clinical trials is improved. In recognition of this need, IT-based multi-centre e-Infrastructures such as the Brain Monitoring with Information Technology group (BrainIT - www.brainit.org) and Cooperative Study on Brain Injury Depolarisations (COSBID - www.cosbid.de) have been formed. A serious impediment to the effective implementation of these networks is access to the know-how and experience needed to install, deploy and manage security-oriented middleware systems that provide secure access to distributed hospital based datasets and especially the linkage of these data sets across sites. The recently funded EU framework VII ICT project Advanced Arterial Hypotension Adverse Event prediction through a Novel Bayesian Neural Network (AVERT-IT) is focused upon tackling these challenges. This chapter describes the problems inherent to data collection within the brain injury medical domain, the current IT-based solutions designed to address these problems and how they perform in practice. We outline how the authors have collaborated towards developing Grid solutions to address the major technical issues. Towards this end we describe a prototype solution which ultimately formed the basis for the AVERT-IT project. We describe the design of the underlying Grid infrastructure for AVERT-IT and how it will be used to produce novel approaches to data collection, data validation and clinical trial design is also presented

The Lottery of Birth: Giving all Children an Equal Chance to Survive

Based on inaugural analysis of disaggregated data from 87 low and middle income countries around the world, this report reveals that in more than three quarters of these countries, inequalities in child survival rates are actually worsening, resulting in some groups of children making far slower progress than their better-off peers. In 78 percent of the countries covered in the report, at least one social or economic group has fallen behind and is therefore making slower progress in reducing child mortality, and in 16 percent of these countries, inequalities in child survival rates have increased across all social and economic groups. Save the Children's analysis suggests that, without a true step change in action, the lottery of birth will continue into the future, slowing progress towards the ultimate goal of ending preventable child deaths for generations to come. However, tackling this inequality is possible. Almost a fifth of the countries in the report, including Rwanda, Malawi, Mexico, and Bangladesh, have successfully combined rapid and inclusive reductions in child mortality, achieving faster progress than most countries, while at the same time ensuring that no groups of children are left behind.The agency calls for the international community to commit to ending preventable child deaths by 2030.The new development framework, which will replace the MDGs, will be agreed upon at the United Nations General Assembly in September 2015. This framework must set out ambitious child and maternal survival targets and commit to working towards universal health coverage