The Research

Public Health e-Labs: An ethical model and architecture for distributed epidemiology using healthcare records

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Citation for published version (APA): Buchan, I., Ainsworth, J., Goble, C., Rector, A., & O'Brien, S. (2009). Public Health e-Labs: An ethical model and architecture for distributed epidemiology using healthcare records. Poster session presented at Public Health Information Network, Altanta, . Citing this paper Please note that where the full-text provided on Manchester Research Explorer is the Author Accepted Manuscript or Proof version this may differ from the final Published version. If citing, it is advised that you check and use the publisher's definitive version.

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Download date:27. Sep. 2021 Public Health e-Labs: An ethical model and architecture for distributed epidemiology using healthcare records

John Ainsworth, Carole Goble, , Sarah O’Brien, Iain Buchan Northwest Institute for Bio- & School of Computer Science, University of Manchester, UK [email protected]

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 e-records; and 2) make epidemiological analyses and methods more sharable and reproducible.

Using model health and research communities we developed an ethically-robust 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, individual 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 English National Health Service in Salford. Production-level 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.

Legacy: Proposed: Registries / Database-centred e-Lab / Community-centred ‘Defining an information currency that reflects appropriate ethics & governance...’

Templates, coded in RDF, define the purpose Clinical Clinical Information Anonymised and domain specific structure, allow graceful Governance Provenance captures: Clinical e-Lab degradation of understanding, and permit who, what, when, where, how. generic Work Object services to be created. x Health Agencies Version Research Governance Integrated Health Contents Provenance Records Permissions Class Ethical Oversight

Environs Ancestry Identity Template Workflow

Services Individual Research Annotations State Content Item Permissions x Research Agencies x Health Communities A Work Object may embed other Locator work objects as content-items, Provenance Content items may be 1. Community-centred information governance enabling composition. Type embedded or referenced.

‘Integrating data, methods and people for reproducible, sharable intelligence ...’ 2. Anatomy of a Work Object

Work Object Services Resources

GIS

HPC

Data

Analysis Social

Search Work Object P2P Exchange

Identity

Security

Lifecycle

Metadata

Annotation

Persistence Syndication Presentation

Work Object Communications Infrastructure Work Objects Work Objects Work Objects e-Lab e-Lab e-Lab Workbench Resources Resources Resources

Governance

3. e-Lab Functional Architecture Resource Broker ‘Sharing context-specific intelligence (processes) across boundaries of trust...’ 4. Global Federation of e-Labs