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Related Experiment Video

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Methodology for Establishing a Community-Wide Life Laboratory for Capturing Unobtrusive and Continuous Remote Activity and Health Data

Methodology for Establishing a Community-Wide Life Laboratory for Capturing Unobtrusive and Continuous Remote Activity and Health Data

Published on: July 27, 2018

Sharing health data: good intentions are not enough.

Elizabeth Pisani¹, Carla AbouZahr

¹London School of Hygiene and Tropical Medicine, Keppel Street, WC1E 7HT, London, England. pisani@ternyata.org

Bulletin of the World Health Organization

|June 12, 2010

Summary

Public health researchers and global health agencies are slow to share data, hindering progress and denying public good. Overcoming obstacles requires addressing professional structures, funding, and practical data management challenges.

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Area of Science:

Public Health
Epidemiology
Global Health Data Management

Background:

Public health and epidemiology research is slow to adopt data sharing practices.
Global health databases and researchers are reluctant to share valuable data.
Data sharing offers maximum knowledge from existing investments with minimal additional cost.

Purpose of the Study:

To highlight the slow progress in data sharing within epidemiology and public health.
To identify and address the obstacles hindering effective data sharing.
To propose actionable goals and a work plan for advancing public health data sharing.

Main Methods:

Analysis of current data sharing practices and policies in public health research.
Identification of systemic and practical barriers to data sharing.
Development of a proposed work plan and goals for data sharing initiatives.

Main Results:

Significant reluctance exists among epidemiologists, public health researchers, and global health agencies to share data.
Professional structures, funding models, and career paths undervalue data management and sharing.
Practical issues concerning data storage, access control, and long-term funding remain unresolved.

Conclusions:

Failure to share data impedes progress in reducing illness and death, and deprives taxpayers of research benefits.
Existing obstacles to data sharing are known and surmountable, as demonstrated in other fields.
A coordinated institutional effort is needed to define tasks and responsibilities for implementing a data sharing work plan.