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What is Health Data?

Claus Rehfeld1, Melanie E Kreye1, Helena Goldstein Wendelboe2

  • 1Technical University of Denmark - DTU.

Communication & Medicine
|February 7, 2025
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Summary
This summary is machine-generated.

A clear definition of health data is needed for effective policy and ethical use. This study empirically characterizes health data, distinguishing between source and use, and including clinical, population, and structural data for a functional, interdisciplinary definition.

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Area of Science:

  • Health Informatics
  • Public Health
  • Data Governance

Background:

  • The term 'Health Data' lacks a clear, agreed-upon definition, hindering effective law-making, ethical discussions, and solution development.
  • Vague understandings of health data lead to inconsistent utilization, preventing the realization of its societal value.

Purpose of the Study:

  • To empirically characterize health data to facilitate a more rigorous and informed discussion.
  • To explore the characteristics of health data to support the formulation of an interdisciplinary, functional definition.

Main Methods:

  • Qualitative interviews were conducted with 30 Danish stakeholders involved in health and data.
  • The study explored the characteristics of health data through stakeholder perspectives.

Main Results:

  • A functional definition of health data requires distinguishing between the data's source and its application.
  • The definition must encompass clinical data (patient-level), population health data (status and behaviors), and structural data (health system, societal, and environmental factors).

Conclusions:

  • An empirically-derived, interdisciplinary definition of health data is crucial for consistent and effective utilization.
  • Acknowledging the multifaceted nature of health data (source, use, clinical, population, structural) is key to unlocking its full societal potential.