Health data cooperatives - citizen empowerment

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.