Research

Researching the unmet needs, value proposition, key considerations for implementation, as well as different use cases in decentralized health data management, is critical to advance our mission. Please find below the list of publications authored or co-authored by Etheros HealthData Foundation.


2025: Decentralized AI in Healthcare: From Theory to Practice

Healthcare stands at a transformative crossroads. As AI becomes central to medical innovation, a fundamental question emerges: who controls the data, infrastructure, and governance that power these technologies? This comprehensive report examines how decentralized AI (dAI) is moving from theory to practice across global healthcare systems.

Key Findings

The Current State (2025):

  • 10 million projected healthcare worker shortage by 2030

  • Unsustainable costs and fragmented care delivery

  • Regulatory barriers to traditional centralized data aggregation

  • dAI emerging as complementary approach, not replacement

What We Discovered:

  • Hybrid architectures outperform pure decentralization – successful implementations balance local autonomy with coordinated governance

  • Governance investment equals technical investment – organizations require 2-3 years developing legal frameworks before operational deployment

  • Four convergent forces driving adoption: technological maturation, regulatory mandates, economic imperatives, and societal shifts toward patient empowerment

Report Structure

Chapter 1: Setting the Stage – Healthcare’s inflection point and forces driving decentralization

Chapter 2: Foundational Framework – Technical foundations across three pillars: decentralized data management, compute & control, and governance

Chapter 3: Decentralized Data Collection & Processing – How organizations collect and process health data while maintaining privacy

  • MELLODDY Consortium (Europe): 10 competing pharma companies collaborate on drug discovery via federated learning across 1.3+ billion data points

  • Mayo Clinic Platform (USA): “Data Behind Glass” enables 81 developers to analyze 45+ million patient records without raw data leaving Mayo’s infrastructure

  • SEOVE – Cadeia de Cuidados (Brazil): Federated care coordination for domestic violence survivors in resource-constrained settings

  • Acoer Clinical Trials Platform (USA): Blockchain-based immutable audit trails on Hedera Hashgraph

Chapter 4: Decentralized Model Development & Training – AI models trained using decentralized computational infrastructure

  • DeepSeek R1/VL (China): Open-source sovereign AI deployed across 100+ Chinese hospitals with complete local data control

  • Akash Network & Aethir (Global): Decentralized GPU marketplaces offering up to 85% cost savings versus traditional cloud

  • Bittensor (Global): Open marketplace for collaboratively training AI models through incentivized contribution

  • ASI Alliance (Singapore/UK): Autonomous agents coordinating multi-domain medical reasoning

Chapter 5: Decentralized Validation & Deployment – Transitioning AI systems to production environments

  • VitaDAO (Switzerland): DAO governing longevity research—10,000+ community members directing $4.1M across 22+ projects via blockchain voting

  • Changi General Hospital’s AimSG (Singapore): National-scale AI deployment with local hospital processing and coordinated national oversight

Chapter 6: Future Directions & Strategic Recommendations – Five-year trajectory analysis and stakeholder-specific guidance through 2030

Research Methodology

  • Systematic literature review following PRISMA 2020 guidelines (87 peer-reviewed studies, January 2023-March 2025)

  • 10 detailed case studies across five continents with standardized analytical framework

  • 6 expert interviews with clinical leaders, legal experts, entrepreneurs, and patient advocates

  • Complementary desk research on regulatory frameworks (GDPR, HIPAA, PIPL, EU AI Act)

About the Authors

Produced through collaboration between Etheros HealthData Foundation (US nonprofit enabling patient data ownership) and Crypto Valley Association’s Sustainability Working Group (Switzerland’s leading blockchain ecosystem).

Co-authors: Carmen Cucul (Blockchain & AI Healthcare Consultant, 15+ years pharma), Antonio Pesqueira (Doctoral candidate, Technology & Healthcare Operations), LeiLei Tang (Medical Affairs consultant, former Takeda Global Medical Lead), Natalia Sofia (Pharmacist & Data Ecosystem Lead), Stephanie Fuchs (Swiss/Liechtenstein tax advisor, blockchain specialist), Thomas Egelhof (Chief Radiologist, 30+ years clinical expertise).

Who Should Read This Report

✓ Healthcare executives evaluating strategic AI investments
✓ Technology leaders building decentralized infrastructure
✓ Policymakers developing regulatory frameworks
✓ Patient advocates championing data sovereignty
✓ Research institutions establishing federated networks

Click here to download the full report.

2024: “Decentralized Health Data Management: An overview of solutions empowering individuals to own, share and benefit from their health data” 

  • In partnership with CryptoValley Association, Switzerland
  • Authors: Carmen Cucul, Hui Huang, Lu Zheng, Thomas Egelhof

Currently, over 30% of all data generated globally pertains to healthcare. Unfortunately, most health data is siloed, unstructured and not shared beyond its primary use. This makes the healthcare system less efficient, accessible, equitable and affordable than it otherwise would be.

In a promising development, the emergence of health and wellness applications, wearables, and decentralized technologies like blockchain have begun to empower individuals with ownership, sharing capabilities, and the opportunity to derive value from their health data.

This report aims to identify and to promote existing decentralized health data management solutions. These are defined as products and services facilitating individuals to: 
 

Store their health data, encompassing information from wearables, patient reported outcomes (PROs), medical records, laboratory results and more 

Share aforementioned health data to chosen entities, whether they be researchers, healthcare professionals, friends and family or others 

Benefit from sharing their data, potentially through rewards such as tokens, badges, or access to discounted or complimentary value-adding products or services  

 

Get In Touch With Us

Send Message

This site is protected by reCAPTCHA and the Google Privacy Policy andTerms of Service apply.

Have Questions?

Please feel free to reach out to us at: 

forum@etheroshealthdata.org