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1.
Philos Trans A Math Phys Eng Sci ; 368(1925): 3845-58, 2010 Aug 28.
Article in English | MEDLINE | ID: mdl-20643680

ABSTRACT

The Economic and Social Research Council (ESRC)-funded Data Management through e-Social Sciences (DAMES) project is investigating, as one of its four research themes, how research into depression, self-harm and suicide may be enhanced through the adoption of e-Science infrastructures and techniques. In this paper, we explore the challenges in supporting such research infrastructures and describe the distributed and heterogeneous datasets that need to be provisioned to support such research. We describe and demonstrate the application of an advanced user and security-driven infrastructure that has been developed specifically to meet these challenges in an on-going study into depression, self-harm and suicide.


Subject(s)
Depression/psychology , Research Design , Self-Injurious Behavior/psychology , Suicide/psychology , Computer Communication Networks , Depression/epidemiology , Electronics , Humans , Scotland/epidemiology , Self-Injurious Behavior/epidemiology , Suicide/statistics & numerical data
2.
Sex Dev ; 4(4-5): 192-8, 2010 Sep.
Article in English | MEDLINE | ID: mdl-20501980

ABSTRACT

Disorders of sex development (DSD) are a rare group of conditions which require further research. Effective research into understanding the aetiology, as well as long-term outcome of these rare conditions, requires multicentre collaboration often across national boundaries. The EU-funded EuroDSD programme (www.eurodsd.eu) is one such collaboration involving clinical centres and clinical and genetic experts across Europe. At the heart of the EuroDSD collaboration is a European DSD registry and a targeted virtual research environment (VRE) that supports the sharing of DSD data. Security, ethics and information governance are cornerstones of this infrastructure. This paper describes the infrastructure that has been developed, the inherent challenges in security, availability and dependability that must be overcome for the enterprise to succeed and provides a sample of the data that are stored in the registry along with a summary analysis of the current data sets.


Subject(s)
Biomedical Research , Disorders of Sex Development/epidemiology , Registries , Europe/epidemiology , Humans , User-Computer Interface
3.
Stud Health Technol Inform ; 147: 201-11, 2009.
Article in English | MEDLINE | ID: mdl-19593058

ABSTRACT

Collaborative research can often have demands on finer-grained security that go beyond the authentication-only paradigm as typified by many e-Infrastructure/Grid based solutions. Supporting finer-grained access control is often essential for domains where the specification and subsequent enforcement of authorization policies is needed. The clinical domain is one area in particular where this is so. However it is the case that existing security authorization solutions are fragile, inflexible and difficult to establish and maintain. As a result they often do not meet the needs of real world collaborations where robustness and flexibility of policy specification and enforcement, and ease of maintenance are essential. In this paper we present results of the JISC funded Advanced Grid Authorisation through Semantic Technologies (AGAST) project (www.nesc.ac.uk/hub/projects/agast) and show how semantic-based approaches to security policy specification and enforcement can address many of the limitations with existing security solutions. These are demonstrated into the clinical trials domain through the MRC funded Virtual Organisations for Trials and Epidemiological Studies (VOTES) project (www.nesc.ac.uk/hub/projects/votes) and the epidemiological domain through the JISC funded SeeGEO project (www.nesc.ac.uk/hub/projects/seegeo).


Subject(s)
Access to Information , Biomedical Research , Cooperative Behavior , Organizational Policy , Semantics
4.
Health Informatics J ; 14(2): 79-93, 2008 Jun.
Article in English | MEDLINE | ID: mdl-18477596

ABSTRACT

A computational infrastructure to underpin complex clinical trials and medical population studies is highly desirable. This should allow access to a range of distributed clinical data sets; support the efficient processing and analysis of the data obtained; have security at its heart; and ensure that authorized individuals are able to see privileged data and no more. Each clinical trial has its own requirements on data sets and how they are used; hence a reusable and flexible framework offers many advantages. The MRC funded Virtual Organisations for Trials and Epidemiological Studies (VOTES) is a collaborative project involving several UK universities specifically to explore this space. This article presents the experiences of developing the Scottish component of this nationwide infrastructure, by the National e-Science Centre (NeSC) based at the University of Glasgow, and the issues inherent in accessing and using the clinical data sets in a flexible, dynamic and secure manner.


Subject(s)
Clinical Trials as Topic , Databases as Topic/organization & administration , Medical Informatics/organization & administration , Access to Information , Computer Security , Epidemiologic Studies , Ethics, Research , Humans , Scotland , State Medicine , User-Computer Interface
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