The Cancer TOT Registry: Transparency For Cancer Patients
The Cancer TOT Act will create the first Treatment-Specific Cancer Registry tracking and comparing survival rates and side-effect rates of FDA-approved cancer treatments.
The first prototype of The Cancer TOT Registry is in development and will be published here later this year.
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The Cancer TOT Registry May Save Your Life
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Purpose
The Cancer TOT Registry will organize anonymized survival and side-effect data of FDA-approved cancer treatments into publicly-available and easy-to-understand data visualizations.
This will allow cancer patients and their families to confidently collaborate with their doctors on treatment plans that prioritize both survival and quality of life.
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Inspiration
The Cancer TOT Registry is designed to protect future cancer patients from unnecessary suffering and to honor cancer survivors and victims.
Its visual layout and interactive highly-filterable structure is inspired by combining aspects of U.S. election data visualizations and The AIDS Memorial Quilt.
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Importance
Every cancer patient's journey is another step in the pathway to a cure.
It is a disgrace that future cancer patients’ lives are needlessly endangered because the overwhelming majority of past cancer patients’ survival and side-effect data is being kept secret by hospitals.
You can protect yourself, your family and every future cancer patient in the country by demanding Congress pass The Cancer TOT Act.
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Existing state cancer registries are not treatment-specific, making them helpful for understanding overall survival likelihood, but useless for patients and families weighing the risks vs. benefits of different treatment protocols.
A publicly-available Cancer TOT Registry, with filters for treatments, cancer type, survival rates, side-effect frequency and patient demographics, will vastly improve on the important but limited data currently being collected by state cancer registries.
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Currently, cancer registries do not track detailed safety rates (injuries or deaths during treatment) or side-effect rates (injuries or deaths post-treatment) of individual treatments or treatment protocols.
This prevents cancer patients and their families from confidently collaborating with their doctors on treatment plans that prioritize both survival and quality of life.
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No federal laws or registries require hospitals to disclose when cancer treatments cause patients to die or suffer catastrophic injuries.
Hospitals are essentially on the honor system.
But the honor system doesn’t work when hospitals hoard invaluable treatment outcome data to compete with each other for patients or are financially motivated to exaggerate the safety benefits of treatments that maximize hospital profits.
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Instead of collaborating with the medical community, hospitals have chosen to silo cancer treatment outcomes internally, keeping life-saving data secret from patients and even from other doctors.
This means if you are diagnosed with cancer, no matter where you seek care, your life will be needlessly endangered because every doctor in the country is in the dark about how often treatment side-effects have killed or harmed patients at other hospitals.
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Cancer patients and their families have the right to know how often treatments kill cancer and how often treatments kill patients.
Those rights are being violated.
It’s easy for hospitals to claim a treatment is effective or that side-effects are rare when hospitals can keep it secret after treatment side-effects result in patients suffering or dying.
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It is a disgrace that future cancer patients’ lives are needlessly endangered because the overwhelming majority of past cancer patients’ survival and side-effect data is being kept secret by hospitals.
One of the largest benefits that The Cancer TOT Registry will provide is ending the unnecessary suffering of cancer patients caused by doctors and patients being unaware of how many former patients have died or suffered catastrophic side-effects from cancer treatments.
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The Cancer TOT Act will put an end to hospitals' selfish and destructive hoarding of invaluable treatment outcome data so it can be utilized by doctors and researchers to cure and improve the quality-of-life of cancer patients.
Today, hospitals’ lack of transparency is endangering cancer patients’ lives.
Forcing hospitals to stop keeping cancer treatment outcomes secret will allow doctors to craft more effective and ethical treatment protocols and remove roadblocks for cancer researchers, while also protecting patients from predatory behavior and minimizing the likelihood of patients suffering.