Medical data explosion requires urgent system changes

14 November 2011

A new report - Towards Precision Medicine - published by the National Research Council earlier this month highlights the need for new systems to incorporate the ever growing health and disease-related information into a single resource that can help improve health outcomes.

The report concludes that a new disease taxonomy would be required, because existing structures (such as the existing ICD) could not optimally incorporate the wealth of biological data now being collected such as molecular, phenotypic and clinical in addition to environmental and health outcome data. The new taxonomy could facilitate the creation of new systems that allow large volume of data to not only become available for research use but also become more directly incorporated into the health care records system potentially leading to changes in how population-based research is currently conducted.
The report also made six recommendations, including undertaking pilot studies to start creating the underlying framework to support such a system. These studies would allow assessment of different practical and conceptual issues, including creating minimum data standards and how to best allow data sharing whilst maintaining data confidentiality and complying with relevant research ethics. Such a system is required in order to allow both researchers and health care practitioners to realise the full promise of ‘precision medicine’, whereby the best available care could be provided to each individual patient.
CommentThe creation of such an extensive data resource could allow researchers to start classifying diseases in myriad ways, allowing enhanced disease classification and diagnosis, which in turn could lead to more accurate and ‘personalised’ treatment for individual patients. A research endeavour as large as this will take many years to establish with the eventual goal being to replace the century old ICD used by the World Health Organization (WHO). The authors rightly mix optimism with caution when saying in their summary that “this infrastructure….is a grand challenge that, if met, would modernize the ways in which biomedical research is conducted and, over time, lead to dramatically improved patient care”.

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