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Open health data: Mapping the ecosystem.

Roel Heijlen1,2, Joep Crompvoets1

  • 1KU Leuven Public Governance Institute, Leuven, Belgium.

Digital Health
|November 15, 2021
PubMed
Summary

Open health data initiatives face challenges due to privacy and ethical concerns. Mapping the open health data ecosystem reveals key factors influencing data accessibility and use.

Area of Science:

  • Health Informatics
  • Public Policy
  • Data Science

Background:

  • Governments possess numerous health-related datasets, including vaccination rates and healthcare practitioner availability.
  • Health data is a promising area for open government data, but privacy, ethics, and ownership pose challenges to accessibility.

Purpose of the Study:

  • To map the open health data ecosystem by analyzing health data foundations and open data commonalities.
  • To develop a socio-technical framework for understanding the openness of government-managed health data.
  • To test the theoretical framework using the Belgian 'Data for Better Health' initiative.

Main Methods:

  • Literature analysis to understand health data properties and open data ecosystems.
  • Development of a theoretical socio-technical model for open health data.
Keywords:
Health datacase studyecosystemgovernment portalsopen data

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  • Case study analysis of a specific government health data initiative.

    • Main Results:

    • An open health data ecosystem model was created and assessed.
    • The model includes stakeholders, interests, information policies, and data preparation activities.

    Conclusions:

    • The health data ecosystem involves de-identification, bioethical assessments, and specific data provider roles.
    • The concept of open data is not universally applicable to health data; some datasets are findable but not directly accessible.
    • Future research should differentiate health data types and user capacities.