Recent Examples of Infrastructure (Databases and Analytics) Engagements in Healthcare (IBM, Truven, Oracle, ATG)

For those of you who enjoyed our reports on informatics platform development in the UK (use the search feature on the blog to look for posts referencing 'NOCRI'), we're going to be focusing again on enterprise platforms which support service delivery and research with a global lens in the coming months. To whet your appetite for upcoming posts here's a selection of projects we've come across in the last week:

 From HealthDataManagement.com: Truven Health Analytics has introduced a new suite of products for statewide health information exchanges, called HIE Advantage Analytics

The suite is designed to enable public health officials to access and analyze operational and clinical statistical data in a state’s HIE. The West Virginia Health Information Network is an early adopter.

HIE Advantage uses near real-time clinical data from providers, claims data from the Centers for Medicare and Medicaid Services, and data from other sources that are stored in state HIE repositories. The goal is to monitor community health status while improving outcomes, according to Truven Health, previously the health care business of Thomson Reuters.

Reports analyze prevalence, process of care and outcome metrics for specific diseases, as well as rates of screening and preventive care to identify communities at higher risk for poor health status. More information is available here.

From Investors.com: The University of Texas MD Anderson Cancer Center Selects Oracle Applications and Technology as Part of Platform to Help Transform Cancer Care

·         MD Anderson, one of the world's most respected centers devoted exclusively to cancer patient care, research, education and prevention, has selected Oracle Health Sciences applications and Oracle technology as the foundation for an organization-wide analytics initiative designed to enable a new generation of personalized cancer treatment that improves outcomes. The platform will also support the center's renowned Moon Shots Program, an unprecedented effort to dramatically accelerate the pace of converting scientific discoveries into clinical advances that reduce cancer deaths.

·         Oracle applications and technology will power the enterprise analytics initiative, one of the program's platforms. The new platform will bring together clinical, genomic, financial, administrative and operational information from internal and external sources to yield insights that drive care innovation and optimize operational efficiency.

·         To achieve its goals, the center, ranked first for cancer care in U.S. News & World Report's "Best Hospitals" survey for seven of the last nine years, will deploy a wide range of Oracle solutions, including Oracle Enterprise Healthcare Analytics and Oracle Translational Research Center

·         MD Anderson, which sees data growth of 30 percent to 40 percent annually, is also deploying Oracle Database and Oracle Business Intelligence Enterprise Edition.

From Executive Biz IBM to Provide Int’l Medical Research Facility with IT Infrastructure, Application Support

IBM and the Dmitry Rogachev Clinical Center have entered into a contract of agreement to deploy PureFlex integrated systems in the Clinic’s facilities to bolster IT support, according to an IBM statement.

“By 2015, we expect to increase the volume of clinical tests five times and to be able to cover 5,000 primary patients generating over a petabyte of medical data,” said Igor Pyatnitsa, head of operations at the Russian Federal Scientific-Clinical Center of Pediatric Hematology, Oncology and Immunology.

“This is valuable data which we must effectively store and manage for medical and legal reasons. IBM’s PureFlex systems help us to do this effectively while controlling costs and ensuring the highest levels of data security,” he added.

The agreement is an extension of an existing contract for the IBM PureSystems roll out.

The center focuses on finding treatment for blood disorders, cancer, immune system diseases, and other diseases. It is a part of the Russian Ministry of Health and a chief collaborator on more than 400 projects, 100 clinical trials and 20,000 medical tests per year.

This will be the first time PureFlex will be used in Russia. PureFlex technology will assist the center with installing fast systems and critical medical applications.

It will also help in organizing their extensive medical data repository through an automatic locator using existing applications. The hospital hopes that this will lead to better collaboration and field research.

Andrey Filatov, Director, IBM Systems and Technology Group for IBM in Russia and the CIS said the PureFlex Systems is meant to provide a platform for Russian healthcare and medical research development.

The offering is tuned for cloud computing and can consolidate more than 100 databases on a single system and helps to rapidly deploy medical applications.

From Executive Biz: Allied Technology Designing, Analyzing Army Medical Research Projects [Databases, Analytics]

Maryland-based information technology and engineering provider Allied Technology Group has won a five-year contract to help a U.S. Army medical research facility in Silver Spring design, analyze and report on projects.

ATG says its statisticians and public health analysts work with the Walter Reed Army Institute of Research ("the largest and most diverse biomedical research laboratory in the Department of Defense") to include and exclude criteria, select study subjects, develop analytic databases and analyze statistics.

The company will provide the institute a team of epidemiologists, biostatisticians and administrative personnel for analysis, collecting and entering data, managing databases and programming computers.

Since 2007, ATG says staff members have authored and co-authored articles for 30 peer-reviewed publications and 34 scientific presentations on their work at the institute.

ELIXIR - 'A sustainable infrastructure for managing biological information in Europe' - One year on

It's been nearly a year since we last wrote about Elixir, the European research infrastructure project looking to support life-science information. Our friends at the European Bioinformatics Institute made us aware at the time that a pan-European project was under way to build and operate a sustainable infrastructure for managing and safeguarding biological information including genetic, protein and complex network analysis outputs.

So what's been happening in the intervening period?

Another seven countries have signed the Memorandum of Understanding in that time, broadening the remit and support-base for the initiative. The wider this base the better in light of the organisation's assertion that "the collection, curation, storage, archiving, integration and deployment of biomolecular data is an immense challenge that cannot be handled by a single organisation or by one country alone, but requires international coordination."

The European Commission's Community Research and Development Information Service (CORDIS) page on the project indicates that the first phase of funding is due to come to an end in December 2012 having run for five years. The project's aims over that period were all directed at gaining the widest possible support for the initiative by means of Memoranda of Understanding and included defining:

• The scope of the infrastructure, its role and benefits
• An appropriate governance and legal structure
• A long term funding structure to provide a sustainable infrastructure
• The requirements for the European Data Centre in the next 5-10 years
• The critical interdisciplinary links that need to be forged between the biological and related scientific disciplines, including medicine, agriculture and the environment
• The needs of related European industries
• A training strategy to ensure that Europe effectively exploits all the available information

In carrying out this work Elixir assert that they were committed to involving all relevant stakeholders including users, data providers, tools providers to ensure that the infrastructure designed would be fit for purpose and exploring interoperability and supporting standards facilitating the between integration between core and specialised data resources.

Back in November 2011, we were anticipating the the Interim Board's announcement of the first phase of construction, however, we should point out that this period in Elixir's development is still the Preparatory Phase which title may make sense of the difficulty we've had finding concrete outputs from the project - the website for the Preparatory Phase is a little low-tech and also a little out of date - for more up-to-the-minute news see the Press Releases page on the main Elixir site from which you can see that much of the recent news involves the 'on-boarding' of various different European states but also covers the inception of their newsletter and, of most interest to us, the start of a new initiative co-ordinted by Elixir: BioMedBridges.

In their own words: "BioMedBridges is a joint effort of ten biomedical sciences research infrastructures on the ESFRI roadmap. Together, the project partners will develop the shared e-infrastructure—the technical bridges—to allow interoperability between data and services in the biological, medical, translational and clinical domains and thus strengthen biomedical resources in Europe. Launched in January 2012, the four-year initiative has been financed with €10.6 million by the European Commission’s Seventh Framework Programme."

Managing Research Data - the Joint Information Systems Committee Programme

In covering the BRISSkit vision for a cloud-based open-source "research application as a service" at the end of last year, we mentioned the Joint Information Systems Committee's (JISC)  Managing Research Data workstream about which we've been hearing a lot more recently and thought we should pass on the basics and a link for your own browsing:

JISC are a non departmental public body who support higher education and research in the UK by providing advice on the use of ICT - their Managing Research Data workstream supports both good data management and the sharing of data "for the benefit of UK Higher Education and Research". Their work in this area focuses on infrastructure, practice and skills:

• piloting essential research data management infrastructures within institutions and for distributed research groups
• improving practice in research data management planning
• developing tools to help institutions plan their research data management practice
• encouraging the publication of research data and demonstrating the benefits of improved methods for citing, linking and integrating research data
• and, stimulating the acquisition of appropriate skills, among academics and research support staff in Universities

Follow this link to their page which contains further information about their internationally recognised Digital Curation Centre and more information on the five strands of the programme which include projects, planning, tools and training.

Data Sharing - the MRC Data Support Service and Research Data Gateway

Whilst still working on an analysis of  research funders' policies with regard to data sharing we ought to update you on the progress made by the MRC on their Data Support Service. We posted on this in May 2011 and certainly  by late last year had not heard anything further but are now delighted to see that the MRC have a few new pages indicating that phase II ( "develop[ing] a prototype online gateway for the discovery of MRC-funded population and patient studies and their variables with a Directory of MRC population cohort datasets")  has completed and that phase III is underway about which you can read more on their site from whence these bullet points:

• [Phase III is] Developing policy guidance for population and patient studies on sharing of research data and on data management planning, with expert input and in line with policies of other funder to ensure harmonised principles
• Launching the prototype MRC Research Data Gateway to facilitate the discovery of research data, metadata and documentation
• Planning and developing a sustainable MRC Research Data Gatewayand Directory of Population and Patient Research Data, with data management toolkit to support data sharing
• Engaging further cohort studies to contribute metadata to the Directory of Population and Patient Research Data
• Growing a data managers network with a programme of value-adding activities, to enable the preceding objectives

We're particularly interested in the Research Data Gateway given our recent experience developing resource discovery portals (e.g. ONIX). The information available for each study accessible through the gateway is given below - we're not sure how to interpret 'Variable' and can't help but reflect on the lost opportunity of the now non-current DoCDat catalogue of clinical databases which provided very rich metadata on its resources including qualitative analyses - for more info on that see our blog post:

• Study: a programme of research whereby data from and about individuals representing a population group are collected and analysed
• Time period: a wave, sweep, time period or time point within a longitudinal study
• Data collection event: a survey, screening, interview series or clinic, being the event through which research data were collected; there can be various data collection events within a phase
• Variable: each data variable belongs to a particular study, phase and data collection event
• Contact: point of contact for a study
• Resource: an information item for a study, e.g. a questionnaire form, report, etc.

Data sharing in research - cultural and technical barriers in Life Sciences and Public Health

As promised for the PDF-shy - the first section of our review of attitudes to data sharing in Life Sciences and Public Health - it's also well worth reading the Research Information Network's (RIN) publication Data centres: their use, value and impact which RIN neatly summarise here. This review was meant to serve as a 'primer' aggregating analyses from the last few years in this area and as such references other publications pretty heavily - so do check out the footnotes if you want to explore further. We'll post the next section on Funders' policies tomorrow.

Summary: Initiatives pursued by the funders and publishers of research to promote data-sharing have moved the agenda forward, however, cultural and technical barriers remain. Attitudes and abilities vary across specialities within biomedical research and though obliging data sharing has had some success, incentives and expertise are still lacking in many areas.

  The Current Situation

 The last ten years have seen consistent and targeted promotion of data sharing in research by organisations such as the Research Councils, the National Cancer Research Institute (NCRI), research charities and other funders and publishers of research. The aims are clear: “Ensuring data are made widely available to the research community accelerates the pace of discovery and enhances the efficiency of the research enterprise.”[1]

The assumption is that data sharing is a ‘good thing’ and that connectivity between data will enable greater research potential. There has been a lot of activity in areas such as access and governance, initiatives providing portals and developing standards and there is evidence that “in many research fields – from genetics and molecular biology to the social sciences –data sharing is ingrained in how researchers work”[2] and that, with regard to Systems Biology at least, “data sharing, despite some anomalies, is the prevailing ethic.”[3]

The picture is mixed across the life-sciences, however, as noted in this recent call for contributions to a thematic series on data standardisation, sharing and publication by the online Journal BM Research Notes: “different disciplines have embraced the possibilities of data sharing and open data to differing extents, and it can take the leadership of a small number of individuals to develop and promote their standard to secure widespread adoption, and enable interoperability of scientific data… In other cases a standard of data collection and preparation might be well known amongst circles of experts but perhaps unknown to researchers in different or even related fields. But with few journals considering data-driven articles and apparent inconsistencies in incentives and rewards for data publication, the availability of definitive and freely-available examples of re-usable, standardized data across the life sciences is patchy at best.”[4]

Funders and journals are addressing this issue, promoting data sharing by various means including policies obliging researchers to make their output publicly available. However, “Where funder policies do not reach, there is a mix of results. Some researchers make great efforts to share data while others may retain their findings or publish in a form that means that although data are available, they are not readily accessible”[5] or ‘protecting by pdf’ as the practice is known within the community.

The situation is least advanced in Social and Public Health Sciences: “There are many datasets produced by individual researchers or small project teams that could have long term viability if they were offered to an appropriate data centre, but this tends not to be the natural course of things. The sharing of datasets from small scale research projects appears to be relatively uncommon at present.”[6] Other analysts concur: “By contrast, this culture has yet to be widely embraced by the public health research community.”[7]

Whilst the battle for cultural change appears to be far advanced in some areas and at least engaged in others, attitudes are not the only barrier: “Problems of reuse centre around… technical issues… – the variety of formats, the non-standardisation of formats, the need for proprietary software and so forth.”[8]

The picture is not uniform across all fields within biomedical research - in some areas data sensitivity and cultural barriers remain more challenging to address than technical and ethical issues. Others, genomics for example, appear comparatively mature, with both cultural and technical issues well in hand.

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[1] Walport M, Brest P. Sharing research data to improve public health. The Lancet, Early Online Publication, 10 January 2011

[2] Ibid.

[3] To Share or not to Share: Publication and Quality Assurance of Research Data Outputs - Report commissioned by the Research Information Network (RIN) in association with the Joint Information Systems Committee and the National Environment Research Council (NERC) – published June 2008. This report covered six discrete research areas, two of which were Social and Public Health Sciences and Genomics and two interdisciplinary areas, one of which was Systems Biology.

[4] A call for BMC Research Notes contributions promoting best practice in data standardization, sharing and publication; http://www.biomedcentral.com/1756-0500/3/235/

[5] Ibid.

[6] Ibid.

[7] Walport M, Brest P. Sharing research data to improve public health. The Lancet, Early Online Publication, 10 January 2011

[8] To Share or not to Share: Publication and Quality Assurance of Research Data Outputs

UKCRC Funders' vision for Human Tissue Resources - STRATUM project

We had an interesting 'phone conversation today with the head of the STRATUM project and one of the project's workstream leads discussing what promises to be a valuable and long-necessary piece of work looking at the creation of a centralised biobanking data repository for the UK.

Funded in part by the Technology Strategy Board, it will be a public-private partnership. STRATUM (Strategic Tissue Repository Alliance Through Unified Methodology) aims to maximise the value of stored human tissue by creating the foundations of a UK biobanking network. The project will run from October 2011 for 18 months. The partners in the project at present are: 


From Pharma: AstraZeneca UK Ltd (lead), GlaxoSmithKline, Lab21 Ltd

From Academia: University of Manchester, University of Nottingham, University of Leicester

There's not a great deal out there on the web at present about the initiative but check out the UK Clinical Research Collaboration's notes on the workstreams involved.