Community Empowerment through Health Information ​

CEtHI For Breast Cancer

​The Story

• The Wait: When Time Costs More Than Money

• Information is a Right, Not a Privilege

• Fragmented Care: How Healthcare Lost Its Way

• Patient-Led Revolution: Reclaiming Healthcare's Future

Description of items in perks

• Personalized Cancer Data Analysis, Research Integration and Trajectory

• Health Collaboration Hub

• Patient Research Participation

• Founding Member Art Recognition

Building the Future: CEtHI's Development Roadmap

• Precision Care Management (Months 4-6)

• Patient-Owned Electronic Health Record - POE (Months 6-8)

• Regulatory Impact & Research

The Story

1. The Wait: When Time Costs More Than Money

"I hit the hardest wait so far, waiting for my Onco Score... I've told them all, I do better with information. This 'report' did not provide it. Depression has brought me to a standstill, and now more waiting."

These words from a breast cancer patient capture a reality that shouldn't exist. This patient, like thousands of others, waited eleven days for critical information about their cancer - information that could have been available much earlier. The emotional toll of this waiting isn't just an unfortunate side effect of cancer care - it's a symptom of a healthcare system that prioritizes institutional convenience over patient needs.

Let me explain why this waiting is unnecessary, and in doing so, show you why we need to fundamentally reimagine how healthcare works.

The Oncotype DX test is a critical tool in breast cancer care - it analyzes 21 genes to help determine a patient's risk of recurrence and guide treatment decisions. Traditionally, this test is performed after surgery on the removed tumor tissue. Patients often wait weeks between their initial biopsy, surgery, and finally receiving their Oncotype results. This waiting period isn't just inconvenient - it's emotionally devastating and medically unnecessary.

We know this because research has already shown that this same test can be performed on the initial diagnostic core biopsy - the very first piece of tissue taken when investigating a suspected breast cancer. A clinical trial is currently underway comparing these approaches, acknowledging what many of us in the field have long recognized: waiting for post-surgical testing creates unnecessary delays and anxiety.

But here's what's particularly telling: during the COVID-19 pandemic, when hospitals needed to defer surgeries, they suddenly found ways to perform this testing on core biopsies. The technical capability was always there. The barrier wasn't scientific or technical - it was institutional.

This pattern - where patient benefit takes a back seat to institutional convenience - isn't unique to Oncotype testing. It's emblematic of a deeper problem in healthcare, where information that could empower patients is often withheld or delayed not because it must be, but because that's how the system is structured to operate.

When I speak with patients in breast cancer forums, I consistently hear variations of the same theme: "I do better with information." This isn't just about emotional comfort - it's about patients wanting to be active participants in their own care decisions. Yet our current system often treats patients as passive recipients of care rather than partners in their own health journey.

As a cancer genetic epidemiologist with two decades of experience in both academia and industry, I've witnessed the growing disconnect between what's technically possible in cancer care and what patients actually receive. The cost of comprehensive genetic testing has plummeted - full exome sequencing now costs just $300 commercially - yet most patients still receive only basic testing panels. We gather rich genomic data only to discard it because it's not deemed "actionable" under current guidelines.

This is where CEtHI begins - not just with addressing these individual gaps in care, but with fundamentally reimagining how healthcare information flows between patients, providers, and institutions. The Oncotype waiting period is just one thread in a larger tapestry of systemic issues, but it perfectly illustrates why we need change: the technical capabilities exist, the scientific understanding exists, but the system isn't structured to prioritize patient empowerment through information access.

2. Information is a Right, Not a Privilege

The story of unnecessary waiting for test results opens up to an even more complex reality: how our healthcare system's structure can keep vital information from reaching patients, even when that information exists.

Consider another patient's experience: For five years, she followed her prescribed course of Anastrozole, a hormone-blocking medication commonly used after breast cancer treatment. The pain in her knees became so severe it robbed her of one of life's simple pleasures - gardening. Constant exhaustion colored her daily existence. As she approached the five-year mark, she faced a critical decision about whether to continue for another five years.

It was then that her oncologist, aware of evolving testing capabilities, offered her a genetic test that could help inform this decision. The test revealed that continuing Anastrozole for an additional five years would have reduced her risk of recurrence by just a few percentage points. This information empowered her to make an informed choice about her future quality of life.

But this raises a crucial question: How many other patients face similar decisions without knowing such tests exist? While some doctors stay current with emerging testing options and offer them to their patients, the system isn't structured to make this standard practice.

"You don't know what you don't know."

The issue isn't individual providers - most are deeply committed to patient care. Rather, it's a healthcare system that treats information more as a commodity than a right. The same health data that could inform patient decisions is routinely monetized in transactions between healthcare institutions and pharmaceutical companies, often for millions of dollars.

But here's what many patients don't realize: they are the natural, ethical, and legal owners of their health data. Let that sink in. The information being traded, the data being used to make decisions about your care - it legally belongs to you. The system just isn't structured to help you claim and use it.

This pattern - where critical information exists but doesn't consistently reach patients - isn't about individual choices. It's built into the very architecture of our healthcare system. The standardized protocols and guidelines that help ensure consistent care can also create barriers to personalizing that care based on individual patient values and circumstances.

3. Fragmented Care: How Healthcare Lost Its Way

Let's return to our third patient's experience: When she experienced side effects from her hormone blocker medication, she found herself bounced between providers - her oncologist telling her "it's not what we do" and referring her to her primary care physician. Her frustration is palpable.

This fragmentation isn't about individual doctors making poor choices. It's about a system designed around institutional convenience rather than patient needs. When this patient later chose to use Minimal Residual Disease (MRD) testing to monitor for molecular recurrence rather than following standard treatment protocols, she wasn't rejecting medical expertise - she was asserting her right to make informed decisions about her own care.

The response from one oncologist to this kind of patient autonomy is telling: "What patients want is not my problem. I need to only do what is evidence-based." This level of certainty reveals a fundamental misunderstanding of how science works. Medical evidence is not a fixed target - it evolves constantly. What's "evidence-based" today may be outdated tomorrow. More importantly, evidence can tell us what happens to populations, but it can't tell us what's right for an individual patient with their own values, circumstances, and priorities.

"I am not a hot potato."

This is where the current healthcare system's structure becomes its own worst enemy. Institutions house providers. Providers follow institutional protocols. Patients must navigate between these institutions, each with its own systems, rules, and gatekeepers. At every step, the patient's comprehensive experience becomes fragmented into specialized silos of care.

Consider how this affects real care decisions: When a patient reports debilitating side effects, they might be told these are "expected" or "manageable" because that's what the population-level data suggests. Their individual experience becomes secondary to statistical norms. When they want to explore alternative monitoring approaches, they might be discouraged because it's "not standard of care" - even though they're the ones living with the consequences of these decisions.

The irony is that modern healthcare has more tools than ever to personalize care. We can sequence entire genomes for a fraction of what it cost a decade ago. We can monitor disease at the molecular level. We can process and analyze vast amounts of health data to identify patterns and possibilities. But our system's structure - built around institutions rather than patients - often prevents us from using these capabilities to their full potential.

4. Patient-Led Revolution: Reclaiming Healthcare's Future

So, what would a truly patient-centered healthcare system look like? Not just in theory, but in practice?

At CEtHI, we're building a patient-led healthcare organization that turns the current model on its head. While we'll begin with the established framework of chronic care management - which gives us a foundation within the existing healthcare system - our vision goes far beyond managing chronic conditions.

Imagine a community where patients aren't just recipients of care, but active directors of their healthcare journey. Where your data isn't scattered across various institutions, but collected, organized, and controlled by you. Where research isn't something that happens to patients, but something that happens with patients, driven by their needs and priorities.

"Patients are the natural, ethical, and de facto legal owners of their own data."

This isn't a fantasy. The pieces are already there:

The technology exists to gather and analyze comprehensive health data

The legal framework recognizes patients as the rightful owners of their health information

The research capabilities exist to generate real-world evidence from patient experiences

The expertise exists to interpret and apply this information meaningfully

What's missing is the structure to bring these pieces together under patient control. This is what CEtHI will provide.

When you join CEtHI, you're not just signing up for another healthcare service. You're becoming part of a community that will:

• Help you collect and understand ALL your health data, not just what individual providers choose to share

• Connect you with others who share your health experiences and goals

• Provide you with deep, contextual understanding of the latest research relevant to your condition

• Support you in making informed decisions that align with your values and priorities

• Advocate for your choices with your care team

• Use your experiences (with your consent) to generate evidence that can help others

But even more importantly, you're joining a movement to fundamentally transform healthcare. Every patient who takes control of their health data, every decision made with complete information, every piece of research generated from real patient experiences - these all help shift the power dynamics of healthcare back toward patients.

Think about those tests that could have been done earlier, those treatment options that were never mentioned, that data that was sold without your knowledge. Now imagine a system where patients collectively decide what information to gather, what research to conduct, what questions to ask.

We'll measure our success not just in better individual outcomes, but in systemic change. We aim to demonstrate through research how patient access to and control of health information impacts both individual care and medical progress. We'll document how patient-led healthcare can accelerate the translation of research into practice. We'll gather evidence that can influence FDA regulations on testing and diagnostics.

The healthcare system transacts on patient data - that's what fuels the system. When patients take collective control of that data through organizations like CEtHI, we create the leverage needed for real change. Experts and technology providers will compete to serve the patient community rather than acting as gatekeepers.

This is the revolution in healthcare that CEtHI aims to spark. We're starting with breast cancer patients because we've seen how this community can drive change when empowered with information. But our ultimate goal is to create a model that can transform healthcare for all patients.

Will you join us in building this future?

Description of items in reward tiers

Item 1: Personalized Cancer Data Analysis, Research Integration and Trajectory

A comprehensive analysis and visualization of your data and its relationship to publicly available breast cancer data from the cancer genome atlas. We help you access your genomic or expression raw data if you have been tested in ways that allow for this. You receive in-depth analysis of your data and connection with ongoing trials and targeted treatments specifically relevant to your case, including explanation of mechanisms underlying therapies that might be effective for your personal tumor profile. We provide a personalized assessment of standard of care that applies to your specific case for your entire patient trajectory, highlighting important decision points along your path. This includes an outline of important considerations for your specific decisions, information on likely therapies and their side effects, as well as what is up and coming in research that relates to your situation. ($250 value)

Item 2: Health Collaboration Hub

Unlike typical support groups or FB groups, this platform provides structured activities every week covering thematically related research, data collection, interactions with providers and the healthcare system, and personal patient stories. Most importantly, you will be able to connect to other breast cancer patients with similarities to your case as you access activities and content of interest. The platform allows you to follow threads of interest and develop relationships with other patients in a cumulative way. Weekly office hours provide access to epidemiological and genomic breast cancer research expertise for your questions. ($80/month)

Item 3: Patient Research Participation

Participate not just as a subject, but as a contributor to research involving the use of health information that varies from clinically actionable to investigational. This research will support our goal of impacting FDA regulations regarding approvals of and access to testing for cancer patients. Participation includes completion of a survey and involvement in research results discussions through livestreams with engaged patients. (40$ value)

Item 4: Founding Member Art Recognition

Be represented in our unique data visualization art piece. Each supporter will be represented by a piece of data specific to them, creating a powerful visual representation of our founding community and the beginning of patient-led healthcare transformation. (10$ value)

Building the Future: CEtHI's Development Roadmap

The items and tiers in this campaign represent just the beginning of CEtHI's mission to transform healthcare. By becoming a founding member, you're not just accessing services - you're joining the first phase of a revolutionary approach to healthcare that will develop in strategic waves.

Precision Care Management (Months 4-6)

We're turning traditional chronic care management on its head. Instead of managing patients for providers, CEtHI will manage care teams for patients. Through partnerships with primary care providers and nurse practitioners, we'll create a new model of healthcare integration - one where the system revolves around the patient, not the institution. This isn't just about coordinating care; it's about fundamentally reshaping how patients interact with their healthcare teams, ensuring that every interaction serves the patient's goals and values.

Patient-Owned Electronic Health Record - POE (Months 6-8)

Imagine an electronic health record designed by patients, for patients. POE will be more than just a database - it will be an intelligent system that patients can directly interrogate and expand through their own AI agent. You'll be able to collect and store ALL your health data in its raw format, from both traditional medical testing and direct-to-consumer sources. Privacy by default, sharing by choice - you'll maintain complete control over your information while having the option to collaborate with others for research. Crucially, POE will empower you with clear information and tools to opt out of sharing your data with any entities you haven't explicitly approved. This puts real control back in your hands, ensuring your health data isn't shared or monetized without your active consent. Through POE, patients will create novel intellectual property by conducting independent research on their collectively owned data.

Regulatory Impact & Research

Throughout CEtHI's development, we'll pursue research examining the ethical and legal implications of patient data ownership and decision-making rights. This isn't research done on patients - it is research done with patients, by patients. Working with our patient communities, we'll gather evidence and build cases for regulatory change that recognizes patients' rightful place at the center of healthcare and healthcare research. Our goal is to create new frameworks for understanding both patient rights and the generation of medical evidence. We will redefine what is considered testing to be more inclusive of all information gathering, what is considered therapy to expand beyond drugs and include integrative and holistic long-term life-style interventions, and what are considered regulatory approvals to reflect the appropriate levels of oversight for both.

The future of healthcare isn't something that will be given to us - it's something we must build together. Your support of this campaign is the first step in creating a healthcare system that truly serves patients by returning control of health data and decision-making to its rightful owners: the patients themselves.