21099 Public Health e-Labs: An Ethical Model and Architecture for Distributed Epidemiology Using Healthcare Records

Sunday, August 30, 2009
Grand Hall/Exhibit Hall
Iain Buchan, MD, FFPH , Northwest Institute for Bio-Health Informatics, University of Manchester, Manchester, United Kingdom
John Ainsworth, MSc , Northwest Institute for Bio-Health Informatics, University of Manchester, Manchester, United Kingdom
Sean Bechofer, PhD , School of Computer Science, University of Manchester, Manchester, United Kingdom
Sarah O'Brien, MD, FFPH , Epidemiology and Environmental Health, University of Manchester, Manchester, United Kingdom
Carole Goble, PhD , School of Computer Science, University of Manchester, Manchester, United Kingdom
Alan Rector, MD, PhD , School of Computer Science, University of Manchester, Manchester, United Kingdom
We address the problem of the scarcity of public health intelligence relative to the amount of data that could be harnessed to protect and improve public health. In particular, we consider how to: 1) preserve individual privacy in population-level uses of health records; and 2) make epidemiological analyses and methods more sharable and reproducible.

Using model health and research communities we developed an ethical model and software architecture known as e-Laboratory (e-Lab). An e-Lab is a set of integrated components that, used together, form a distributed and collaborative space, enabling in-silico investigations. An e-Lab brings together people, data and methods in order to pursue an investigation or solve a problem. With electronic health records, patient-privacy is preserved by: i) integrating and de-identifying  records using locally-governed procedures; and ii) deploying  e-Lab as a population analysis layer on the integrated, de-identified health records, but only within the firewall and governance of the local health community. A community can choose to join a federation of e-Labs, sharing data-extracts and/or analyses - applying locally-acceptable procedures for minimizing deductive-disclosure risks.

 We present an architecture for e-Labs based on the notion of Work Objects - digital resources that encapsulate the inputs, processes and outputs of an exploration or problem-solving activity. An e-Lab is then built from a collection of services that produce and consume Work Objects.

A prototype e-Lab has been deployed in the National Health Service in Salford, England. Production e-Lab software is being written by the North West e-Health project - for healthcare service development, public health and scientific uses.

A global federation of public health e-Labs could promote creative, interoperable public health intelligence - the basic model and architecture is simple, and can be extended organically without the need for large new infrastructure - this represents a good investment for the future.  

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