cancer patients annually settle for standard of care, which is suboptimal because it is not truly personalized care—not because better options don't exist, but because regulatory gatekeeping blocks access to data and information we have the technology to collect.
Cutting edge research-grade analysis gets watered down to simplified reports
Promising testing and therapies are dismissed as "not evidence-based" for decades
Patients are told what to do instead of having part in shared decision-making
CEtHI is systematically dismantling these barriers to give patients true ownership and control.
We're building the infrastructure for healthcare's inevitable transformation from provider-controlled to patient-owned.
Here's what I consistently hear from cancer patients:
- "I know I'm unique, not a population average"
- "Standard of care feels generic for my specific case"
- "I want to understand my own health data, not just receive filtered summaries"
- "I deserve control over decisions affecting my own body"
When patients gain access to their comprehensive data and learn to interpret it, they shift from passive compliance to active participation. They stop accepting simplified explanations and start asking detailed questions about their molecular and clinical profile. They become collaborative partners who push for precision approaches tailored to their specific situation. Only patients have the incentive to truly pursue personalized care.
This transformation changes how they interact with healthcare providers. Informed patients become collaborative partners who contribute valuable insights about their own responses and preferences. They push for better data collection and more thorough analysis because they understand what the information means for their specific situation. The shift from passive to active engagement fundamentally alters the patient-provider dynamic and creates demand for more sophisticated, personalized approaches to care.
Providers and institutions must optimize for efficiency across entire patient panels, which inherently conflicts with individualized care. What's most effective for a population often isn't optimal for the individual. This creates a fundamental misalignment: patients want maximum personalization while healthcare systems need standardized protocols. Informed patients become the primary drivers of precision approaches because they're the only stakeholders whose interests perfectly align with their own specific outcomes.
Tool-Based Approaches
Building tools around patients
- Where is the demand for this?
- What about liability risks?
- How do we handle HIPAA compliance?
- Data portability is impossible
- The data quality is terrible
- No clear business model
Patient-Centered Infrastructure
Building infrastructure with patients at center
- Universal patient demand for empowerment
- Patients own their decisions
- Patients already own data legally (HIPAA)
- Patient ownership enables automatic portability
- Crowdsourced data quality through activation
- Multiple revenue streams from patient value
The Breakthrough: Patient Activation is an Untapped Resource
When patients are educated and empowered, they become the most motivated advocates for their own health outcomes. They drive better data quality because they're invested in getting it right.
We leverage their energy and activation to make data useful to themselves, resulting in crowdsourced data quality without precedent.
These aren't technical problems—they're structural problems that can only be solved by putting patients at the center.
Patient Education & Data Ownership Current
Comprehensive tumor profiling using research-grade methodologies. Six-month patient education programs teaching genomic data interpretation. Raw data ownership (BAM files, sequences) enabling future analysis.
Patient-Owned EHR Platform Launch
Digital infrastructure enabling true patient data ownership and collective insights. Patients upload comprehensive health records and genomic data into a secure, patient-controlled platform. Advanced visualization tools reveal cohort patterns and enable collaborative partnerships with providers and pharmaceutical companies while patients maintain full data control.
Community Formation & Care Coordination
Patient communities forming around shared conditions and goals. Chronic care management with nurses providing coordination between visits. Insurance reimbursement through existing CPT codes. Collective purchasing power for expertise and services.
Web3 Infrastructure & Distributed Ownership
Smart contracts enabling true patient data ownership and revenue sharing. Patient DAOs making collective decisions about care standards and research priorities. Healthcare organizations become service providers to patient communities.
Healthcare System Transformation
Patient-owned healthcare as the standard model. Communities controlling their health data, research agendas, and care decisions. Providers adapt to serve patient-driven demand. Insurance follows patient outcomes and satisfaction.
Patient Education: Six-month programs teaching patients to interpret their own data using tools like the Integrative Genomics Viewer. Patients learn the differences between molecular data types, what research says about their specific mutations, and how to stay current with evolving knowledge.
Raw Data Ownership: Patients receive their actual BAM files and sequences - the raw data, not just processed reports. This enables them to apply new methodologies and knowledge as they become available.
Immediate Impact: Patients are engaging their oncologists about personalized treatment trajectories. Some oncologists are incorporating our reports into medical records. We're seeing improved patient-provider communication and shared decision-making.
Chronic Care Management (Coming Soon): Nurses and medical assistants providing care coordination between visits with a precision-care and patient empowerment focus. This uses existing CPT codes for insurance reimbursement - no regulatory barriers, just straightforward healthcare delivery.
The validation is clear: patients can master complex genomic data when properly educated, and this knowledge transforms their relationship with healthcare providers.
Smart Contracts Replace Insurance Bureaucracy
Instead of fighting insurance companies for coverage, patients use smart contracts—automated agreements that execute when conditions are met. When your tumor profiling shows an ESR1 mutation, the smart contract automatically allocates funds for targeted therapy. No prior authorization delays, no denials based on outdated guidelines.
Patient DAOs Make Healthcare Decisions
A DAO (Decentralized Autonomous Organization) is essentially a digital cooperative where members vote on decisions. Imagine 10,000 triple-negative breast cancer patients forming a DAO that collectively decides which research to fund, which treatments show promise, and which specialists to contract with.
Health Data Becomes Revenue-Generating
Through blockchain technology, you own digital tokens representing your health data. When pharmaceutical companies want to study treatment responses in your patient community, they purchase access using these tokens. You receive payment directly. When your data contributes to breakthrough therapy, smart contracts ensure you share in the royalties.
Community-Driven Care Standards
Instead of one-size-fits-all medical guidelines written by committees, your patient community develops living care standards based on real-world outcomes. When 500 community members with your exact molecular profile show better responses to combination therapy X, that becomes your community's standard—immediately.
Providers Compete for Patient Communities
Hospitals and specialists bid to serve your patient community, not the other way around. Your 5,000-member cancer DAO negotiates directly with oncology practices: "We'll bring you 200 patients this year if you adopt our community's genomic profiling standards and outcome tracking."
The Infrastructure That Makes It Possible
Web3 technology creates the technical foundation for this transformation. Blockchain ensures you truly own your data—no company can lock you out or sell your information without permission. Smart contracts eliminate middlemen who profit from controlling healthcare access. Token economics align everyone's incentives: better patient outcomes literally pay better for everyone involved.
Join the Healthcare Transformation
Patient-owned healthcare is not just a vision—it's happening now. Be part of building the infrastructure that puts patients at the center of their own care decisions and data ownership.
Your participation accelerates the transformation.
For Patients
Take control of your health data and join a community of empowered patients driving personalized care.
For Providers
Partner with us to deliver patient-centered care backed by comprehensive molecular profiling and education.
For Supporters
Support the mission of patient empowerment and healthcare transformation through community building.
For Researchers
Collaborate with engaged patient communities to generate real-world evidence and advance precision medicine.
