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The need for long-term digital retention in eHealth

How long will this remain available and accessible? Image courtesy Everyone's Idle, Flickr .

Although the price for storing data may be falling, there are additional economic challenges involved in ensuring digital content remains available and understandable for future generations. Guaranteeing long-term usability for spiraling amounts of data produced or controlled by organizations with commercial interests is quickly becoming a major problem, says Michael Wilson, secretary of the UK e-Infrastructure Leadership Council. He spoke at length on the subject at a dedicated e-health session held during last month's eChallenges conference in Lisbon. Wilson also presented findings from the ENSURE project, which is examining economical solutions for long term digital preservation in user cases (e.g. healthcare, clinical trials, and finance).

Digital medical data can serve a variety of purposes, depending on the stakeholders involved. Health records and data can be preserved for the benefit of patients, their families and future medical research. Over time, the reasons for collecting specific data-sets may also change. Medical imaging data takes up to 30% of the digital universe. Each record has its own formula (e.g. pathology images are saved in DICOM). In a further 10-20 years, software will inevitably have changed, but virtual environments can preserve the software to make the data useful (e.g. associated manuals, hardware, operating systems). There are, of course, risks in preservation associated with different strategies, and this is what ENSURE is researching. It is also looking at issues surrounding the cost and value of different strategies, how to automate the lifecycle, and scalability options of leveraging new technologies, such as clouds.

For researchers, social media also poses a conundrum, due to its transitory nature. Already, one project is examining how to preserve and manage blogs - 'BlogForever'. Recent studies have revealed that blogs on major historical events have already been lost. BlogForever aims to provide a solution to preserve and organize all blogs, especially those that have historical significance. CERN, for example, is one of the project's partners, with the goal of preserving physics-related blogs. The ultimate vision of the project is to preserve collections of blogs in a cost-efficient manner, safeguarding their authenticity and integrity for users and organizations (e.g. the US National Library of Medicine would like to preserve a collection of health and medicine blogs). Other aims include enabling full-text searching, tagging, sharing and the reuse of content.

The e-health session at this year's eChallenges event also included a section on applications. One successful example of bridging the clinician and IT worlds together has come from the DECIDE (Diagnostic Enhancement of Confidence by an International Distributed Environment) project. DECIDE is using grid-based infrastructure to provide clinicians with an easy-to-use online application for the analysis of neurological data using many reference imaging databases, containing PET, MRI, and EEG data. You can find out more about this in our feature, 'Identifying the first signs of Alzheimer's and dementia'.

This article was originally posted on the GridCast blog.

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