Community Empowerment through Health Information

Transform from passive patient to empowered health advocate through comprehensive genomic medicine mastery.
This six-month journey builds the expertise needed to reclaim control over your health information and decision-making. Rather than accepting simplified summaries, you'll develop the knowledge to access, interpret, and apply comprehensive health data directly.

Learning Path:

• Month 1 - Basic Concepts: Understand molecular data types and why traditional gatekeeping limits your access to crucial health information. Learn how genomic data ownership enables truly personalized medicine.
• Month 2 - IGV Mastery: Gain hands-on control over your raw sequencing data through Integrative Genomics Viewer. Master the same tools researchers use to analyze genomic information.
• Month 3 - Tumor Heterogeneity: Explore how tumors evolve and vary - insights typically reserved for research settings that can inform your treatment strategy discussions.
• Month 4 - Mutational Signatures: Decode the molecular patterns that reveal your tumor's origins and vulnerabilities, moving beyond simplified clinical categorizations.
• Month 5 - Signatera Deep Dive: Master this circulating tumor DNA technology and learn to maximize its potential beyond standard clinical applications.
• Month 6 - Care Plan Development: Synthesize your genomic expertise into strategies for engaging your medical team as an informed partner.

Community of Patient-Researchers: Connect with other patients who share CEtHI's vision of patient-led healthcare. This community provides ongoing peer support, shared discoveries, and collaborative opportunities that extend beyond traditional patient support groups.

Building Your Research Foundation: This education positions you to engage meaningfully with research-level health information, enabling informed decisions about your care and participation in advancing medical knowledge on your own terms.

Collaborate with Paola to unlock insights from your health data and develop strategies that serve your unique health trajectory.
These sessions represent true partnership - you bring your health goals and data ownership, while Paola contributes analytical expertise and research knowledge. Together, we explore possibilities that extend beyond what traditional healthcare typically offers patients.

What We Might Explore Together:

• Deep interpretation of your tumor profiling results within current research context
• Strategies for leveraging your genomic insights in care planning
• Development of personalized monitoring and testing approaches
• Understanding cutting-edge research applications to your specific case
• Crafting informed strategies for engaging your medical team
• Planning additional data acquisition to answer your health questions

Maximizing Our Collaborative Time:

• Patients with genomic foundational knowledge can dive immediately into sophisticated applications
• Those new to genomics may need multiple sessions to build understanding while exploring their data
• Sessions are most productive when you come prepared with specific questions and goals
• We provide pre-session material review and post-session action summaries

Your Role as Owner: You maintain full decision-making authority over how to use insights gained. Paola provides expertise and facilitates discovery, but you determine how this knowledge serves your health goals and care decisions.

Reclaim comprehensive access to your tumor's genomic landscape through detailed analysis that goes far beyond traditional clinical testing.
This report transforms your owned sequencing data into insights typically confined to academic research institutions. Rather than accepting simplified clinical summaries, you gain access to the complete picture of your tumor's molecular characteristics and evolutionary patterns.

Comprehensive Genomic Analysis:

• Complete Mutation Catalog: Every tumor-specific mutation with detailed research-level annotations, not just the handful deemed "clinically actionable"
• Research Context Integration: Your tumor profile analyzed within cutting-edge research frameworks, including comparison with large research cohorts
• Advanced Insights: Tumor heterogeneity analysis, mutational signatures, and clonal evolution patterns typically reserved for research settings
• Actionability Assessment: Information about mutations relevant to current and emerging therapies, beyond standard clinical panels
• Raw Data Liberation: Complete access to your BAM files with tools to apply future analytical advances as science evolves
• Dynamic Analysis Platform: Interactive HTML report that grows with your understanding and new research developments

Breaking Through Traditional Barriers: Standard clinical testing provides only a narrow window into your tumor's characteristics, limited by regulatory approvals and institutional risk management. This analysis leverages your data ownership rights to access comprehensive insights that can inform your health decisions.

Data Requirements & Access: You must have undergone full exome
sequencing of tumor and normal tissue (such as through Signatera or similar comprehensive testing) and be able to exercise your HIPAA rights to obtain the raw data from testing companies.

Ongoing Value: Unlike static clinical reports, your raw data retains value indefinitely. As analytical methods advance and new research emerges, you can apply these developments to your data, maintaining cutting-edge insights into your health.

Transform your raw health data into sophisticated analyses that answer your most pressing health questions.
This service embodies CEtHI's core principle: patients should access and control comprehensive health information, not just what institutions choose to share. We help you leverage your HIPAA rights to obtain raw data, then apply cutting-edge analytical methods typically confined to research settings.

Initial Consultation ($100/30 minutes):

• Map your current health data landscape and HIPAA access rights
• Identify strategic data acquisition opportunities from healthcare providers
• Design analytical approaches aligned with your health priorities
• Develop project scope and investment requirements
• Explore collaboration opportunities with other patient-researchers

Analytical Possibilities (limited only by your data access):

• Clonal evolution tracking across treatment timepoints
• Expression subtype classification for treatment optimization
• Resistance mechanism identification and counterstrategy development
• Longitudinal biomarker pattern analysis
• Comparative genomic analysis with family members
• Custom research questions you develop

Beyond Traditional Limitations: Traditional healthcare restricts access to sophisticated analyses through regulatory barriers and institutional control. We work directly with your owned data, applying methods at the forefront of research to answer questions that matter to you.

Research Collaboration Opportunities: Participate in patient-led research initiatives, potentially contributing to peer-reviewed publications that advance medical knowledge from the patient perspective. Your analyses can contribute to the growing body of patient-driven research.