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Health data cooperatives - citizen empowerment.

E Hafen1, D Kossmann, A Brand

  • 1Ernst Hafen, Institute of Molecular Systems Biology, ETH Zurich, 8093 Zurich, Switzerland,

Methods of Information in Medicine
|February 12, 2014
PubMed
Summary
This summary is machine-generated.

Empowering citizens with Health Data Cooperatives can transform healthcare. This model ensures individuals control their data, benefiting both personal health and society through aggregated insights.

Keywords:
Health datacitizen centriccooperativedemocracyempowermentownership

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Area of Science:

  • Health Informatics
  • Personalized Medicine
  • Data Governance

Background:

  • Rising healthcare costs and ineffectiveness stem from siloed medical data.
  • Lack of molecular and individual data hinders personalized medicine.
  • Technological advances promise longitudinal health data for precision medicine.

Purpose of the Study:

  • Propose a Health Data Cooperative model for citizen empowerment.
  • Enable safe storage, management, and sharing of personal health data.
  • Establish a framework for a more effective and efficient precision medicine ecosystem.

Main Methods:

  • Organize health data platforms as member-owned cooperatives.
  • Grant members control over data sharing with healthcare providers and researchers.
  • Allow members to decide on the reinvestment of anonymized data revenues.

Main Results:

  • Currently, no functional Health Data Cooperatives exist.
  • Existing platforms like 23andMe show user willingness to share data for research.
  • User participation occurs even when commercial data value doesn't return to users.

Conclusions:

  • Health Data Cooperatives place citizens at the center of the healthcare system.
  • This model maximizes health and financial benefits from aggregated personal data.
  • Society benefits from improved health outcomes and economic value generated by shared data.