Community Empowerment through Health Information

A Decentralized Autonomous Organization (DAO) is a new way for groups to organize and make decisions together without needing a traditional company structure or CEO in charge. Instead of one person or corporation controlling everything, the community itself governs through transparent rules and collective decision-making.

Smart Contracts: Your Data, Your Rules
DAOs use "smart contracts"—basically automated agreements that run on blockchain technology. Think of them as digital contracts that automatically execute when certain conditions are met, without needing lawyers or middlemen. For patients, this means you can own your health data completely while still participating in collective activities.

Patient-Led Healthcare and Clinical Decision-Making
CEtHI's DAO isn't just about research—it's about patients collectively developing their own standards of care and clinical best practices. Patient communities can analyze what treatments actually work, develop protocols based on real patient outcomes, and coordinate care decisions based on collective wisdom rather than institutional limitations.

Just like current healthcare institutions contract specialists and expertise as needed, patient communities can hire the clinical expertise they need while maintaining control over treatment decisions and care standards. The difference is that patients set the priorities and make the decisions, rather than being passive recipients of someone else's treatment protocols.

Research and Data Ownership
On the research side, pharmaceutical companies make billions using patient data, but patients see none of the profits and have no say in how their information gets used. In CEtHI's DAO structure, patients retain complete ownership of their data while collectively deciding:

• Which research studies to participate in
• How to share data for maximum benefit
• What terms to negotiate with pharmaceutical companies
• How to split any intellectual property or licensing revenue generated from community insights

Collective Power, Individual Ownership
The DAO allows us to coordinate as a group—for both healthcare delivery and research—while each patient maintains complete control over their own data and decisions. You decide what to share, when to participate, and how to benefit from the value your data creates.

This is infrastructure for patients to organize their own healthcare AND profit from their own health information, rather than being passive subjects of someone else's clinical protocols or research agenda.

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A snapshot from March 2025, when the Legacy Cohort planted the seeds for patient-owned healthcare.

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CEtHI's platform strategy reflects our organizational evolution—from simple community entry points to sophisticated infrastructure enabling true patient ownership and collective action.

Current Platform EcosystemFacebook Group: The Gateway

Our Facebook group serves as the primary entry point for patients discovering CEtHI through breast cancer support communities. This is where initial connections happen, where patients first encounter the possibility of data ownership and empowerment. It's designed as a welcoming introduction to a different way of thinking about healthcare.

Website: Identity & Mission Hub

The website functions as CEtHI's central identity—the comprehensive articulation of our mission, methodology, and vision. Here, patients and collaborators understand what we're building and why. It houses our thought leadership, explains our approach to precision medicine's paradoxes, and serves as the authoritative source for CEtHI's evolving strategy.

Health Collaboration Hub: Education & Coordination

Built on Mighty Networks, our HCH platform is where the real work happens. This is where we conducted education with our legacy cohort, where we house videos and educational content, and where patients begin to experience collective action rather than individual education. Most importantly, it's where we're developing the coordination mechanisms for DAO functionality—allowing patient communities to emerge organically without me at the center.

Future Infrastructure: Web3 & POE Integration

The next evolution integrates smart contracts and our Patient-Owned EHR (POE) platform. This infrastructure will enable patients to interact with their comprehensive health data both individually and collectively. Patients will maintain full ownership while participating in community insights and research initiatives.
The platform will feature distinct interfaces: patients accessing and analyzing their own data, providers collaborating as hired expertise rather than gatekeepers, and research collaborators and precision care companies engaging with patient communities on patient-determined terms.

Strategic Coherence

This platform progression isn't accidental—it mirrors our organizational evolution from patient education to collective action. Each platform serves its purpose in the larger transformation: Facebook for discovery, the website for understanding, Mighty Networks for coordination, and Web3/POE for true patient ownership at scale.

The infrastructure we're building today enables the healthcare transformation we're working toward—where patients own their data, coordinate their care, and drive research priorities through sophisticated collective action.