Total Cancer Care
Health care providers and researchers at the UK Markey Cancer Center are committed to better understanding, detecting and treating cancer. That’s why we are part of an alliance of cancer centers working together on a study to improve cancer care and quality of life for people affected by cancer. The Total Cancer Care study is conducted by the Oncology Research Information Exchange Network (ORIEN) to advance cancer research and search for improved treatment options.
What is Total Cancer Care and ORIEN?
ORIEN is a group of almost 20 select university and hospital cancer centers that use the same protocol — Total Cancer Care — to share anonymized patient data with each other for research and new anticancer drug development. Through this data, researchers are gaining a better understanding of various cancers. They have also created new, highly effective treatments using this research.
Why should I participate in Total Cancer Care?
Participating in Total Cancer Care is up to you, but doing so may help scientists better understand the type of cancer you have. This is the only study in Kentucky studying the genomics of cancer in Kentucky and comparing to other places. That’s important because we are finding out Kentucky cancers are different and may need different treatments. It also:
• Develops a molecular database that can serve as a resource for future research
• Gives physicians a better understanding of patient outcomes and treatment options
• Helps patients find FDA-approved medications and clinical trials that are targeted to their cancer genomics, which may work better and have fewer side effects
• Helps researchers figure out the long-term effects of different cancers and treatment choices
What happens during Total Cancer Care?
Signing up for Total Cancer Care is easy — and it’s free. During a regularly scheduled appointment, a specialist will swab your cheek to collect a genetic sample. They may also collect blood, other bodily fluids or tissue taken during tumor removal. We do not collect these samples without your consent.
Your genetic information is anonymous and linked to your medical records. As your treatment progresses, this information will be updated in the ORIEN database, but it will always remain private. We may also stay in touch with you over time to contact you about future research studies or to collect more information.
Other frequently asked questions about Total Cancer Care
It’s understandable to have questions about your personal genetic information and medical data being shared with people you don’t know. But more than 300,000 patients across the country have already joined Total Cancer Care.
Here are some of the most commonly asked questions:
Q. Will my insurance pay for this?
A. There is no cost to participate in Total Cancer Care. You will not be billed, and neither will your insurance.
Q. Do I need to make a special appointment for this?
A. No. We will swab your cheek when you are at Markey for a regularly scheduled appointment or mail you a kit for collection at home. If we need blood or other tissue samples, we will do that at the same time you get bloodwork done.
Q. How do I know my data is safe?
A. Markey and ORIEN partners are required to follow HIPAA laws to protect your privacy. Additionally, your genetic and medical information for Total Cancer Care is stored in password-protected databases or locked in research files in a secure environment. We will always protect it to the full extent of the law.
Q. Will people be able to use my genetics for other purposes, like finding long-lost relatives or solving crimes?
A. No. This data is only used for scientific cancer research. No one outside of your UK HealthCare provider can see you are connected to the random and anonymous number your data is given. Even if a relative also joins this program, with or without the same type of cancer, their data will not be connected to yours.
Q. Can my insurance company access this information?
A. No. While aspects of your genetic information could be used for your cancer treatment, it is illegal for health insurance companies to otherwise see this information and/or make coverage decisions based on it.
Q. Can I sign up my spouse or parent for this?
A. No. An adult patient must consent in person for this research. We do not accept medical power of attorney to enroll a patient in Total Cancer Care.
Q. How long does the research last?
A. The goal is to follow patients for the rest of their lives, so researchers have a more comprehensive picture of genetics, tumor types, treatments and other health factors.
Q. Can I get treatment somewhere else and participate in Total Cancer Care?
A. Markey is the only hospital in the state or even the region that is a member of ORIEN.
Q. What if I change my mind about this?
A. You can withdraw your consent at any time. While your genetic samples cannot be returned to you, they will not be used after you leave the study.
Q. What if I still have more questions?
A. Your UK HealthCare providers can help answer additional questions about Total Cancer Care. You will also need to complete a detailed patient consent form before you sign up for the program.
FOR MORE
INFORMATION
Visit the ORIEN homepage or email us directly at mccorien@uky.edu.
