Share your experiences and improve the future of cancer care
We are inviting people who have cancer to tell us about their symptoms, treatments, and side effects. Sharing your experiences will help others with cancer or who receive similar treatments in the future. The information you and other patients share will help us develop new and better approaches to cancer care.
About this study
The Kaiser Permanente CARES (Communicating About REcent Symptoms) study is seeking patients aged 18 or older who were just diagnosed with cancer and have started cancer treatment within the last few weeks.
The Kaiser Permanente CARES study team is conducting the study. This group of doctors, nurses, and research staff specialize in studying quality of life and symptom management in people with cancer.
What to expect
If you join the study, we’ll send you surveys asking how you are managing your health, including symptoms or side effects from cancer treatment. We’ll send you 5 surveys over the course of a year (at the first month, then at 2, 4, 6 and 12 months after the first survey) by U.S. mail. If it’s easier for you, you can complete the surveys online (we’ll we send you a web link by email or text). Each survey will take about 30 minutes to complete.
This study is offered by the Department of Research & Evaluation at Kaiser Permanente. Our scientists are working with colleagues at the Georgetown Lombardi Comprehensive Cancer Center and the Dana Farber Cancer Institute. This study is funded by the National Cancer Institute (part of the National Institutes of Health).
The CARES study team will contact you by U.S. mail or email to ask you to join the study. Please remember that participation is voluntary and that you do not have to participate.
You may also be invited to participate in “CARES: Symptom Snapshot”. This is a related study focused on gathering more detailed information about your experiences. This study will involve brief mini-surveys, each taking less than 5 minutes to complete on a device of your choice (mobile device or computer). You will receive these surveys about twice each week for 6 months. This study would require about 3.5 hours of your time over 6 months. In appreciation of your participation, you will receive a gift card to a major retailer after 3 months, and again at 6 months.
The ”CARES: Symptom Snapshot” study is crucial for our understanding of the experiences of people living with cancer and identifying potential areas in need of support.
FREQUENTLY ASKED QUESTIONS
Kaiser Permanente sends me a lot of surveys – why should I complete this one?Kaiser Permanente sends patient satisfaction surveys to members to find out how we are meeting your needs as a member. This survey is different. It focuses on your potential participation in a research study. If you join this study, you can help us understand how to help people with cancer improve their symptoms and health-related quality of life.
How was I chosen for this survey?You were chosen from a group of Kaiser Permanente Southern California members who recently started getting treatment for cancer.
Why do I need to fill out a survey? Can’t you get this information from my medical records?The survey asks about your own experiences as you manage your symptoms while you are receiving cancer treatment. That information is not available in your medical record and your doctor may not know this information about you.
Why am I receiving calls from DRG?DRG (Dieringer Research Group) is a market research firm that we are using to conduct the survey. DRG regularly conducts research surveys on behalf of Kaiser Permanente. They will keep your name and contact information private and secure.
If you have questions about DRG, you can call Research Project Coordinator John Chang at 1-866-422-7212 or email him at CARESstudy@kp.org.
How will you use my name, address, and phone number?In general, for this study you will only be identified by your survey number. The only reason we will use your name, address, or phone number is if we need to contact you to better understand anything in your answers to the surveys.
How can I be sure my information won’t be shared without my permission?Your answers are strictly private. Any reports from the study will describe whole groups of members, and you cannot be identified as an individual. Your answers to our questions will never become part of your medical record, never be given to health care providers or health plan administrators, and never be released outside of Kaiser Permanente in a way that you can be identified.
What are the benefits and risks of participating in this research study?You may not receive any direct benefit. But your participation may help other people facing cancer in the future.
The only small risk is a potential loss of privacy of your information. However, our research staff are trained on how to keep all participants’ information completely private. Any information that we get from you in connection with this study study will be kept confidential and we will follow all legal requirements for confidentiality.
What if I don’t want to participate? Will my medical coverage be affected?You don’t have to participate. It will not affect your medical treatment or health plan benefits as a Kaiser Permanente member if you don’t.
Who can I call if have other questions about the study?Please call Research Project Coordinator John Chang toll free at 1-866-422-7212 and leave a message. Or email him at CARESstudy@kp.org with your questions.
If you have any questions about your rights as a research study participant, you can call the Kaiser Permanente Southern California Institutional Review Board Director Armida Ayala, PhD, at 626-405-3665.
Who are the key personnel involved in this study at Kaiser Permanente?Dr. Reina Haque, PhD, MPH, is a senior cancer epidemiologist in the Department of Research & Evaluation at Kaiser Permanente Southern California. John Chang, MPH, is the research project coordinator. Surveys will be conducted by DRG, a market research company with extensive experience in survey-based research.
Kaiser Permanente sends patient satisfaction surveys to members to find out how we are meeting your needs as a member. This survey is different. It focuses on your potential participation in a research study. If you join this study, you can help us understand how to help people with cancer improve their symptoms and health-related quality of life.
You were chosen from a group of Kaiser Permanente Southern California members who recently started getting treatment for cancer.
Why do I need to fill out a survey? Can’t you get this information from my medical records?The survey asks about your own experiences as you manage your symptoms while you are receiving cancer treatment. That information is not available in your medical record and your doctor may not know this information about you.
Why am I receiving calls from DRG?DRG (Dieringer Research Group) is a market research firm that we are using to conduct the survey. DRG regularly conducts research surveys on behalf of Kaiser Permanente. They will keep your name and contact information private and secure.
If you have questions about DRG, you can call Research Project Coordinator John Chang at 1-866-422-7212 or email him at CARESstudy@kp.org.
How will you use my name, address, and phone number?In general, for this study you will only be identified by your survey number. The only reason we will use your name, address, or phone number is if we need to contact you to better understand anything in your answers to the surveys.
How can I be sure my information won’t be shared without my permission?Your answers are strictly private. Any reports from the study will describe whole groups of members, and you cannot be identified as an individual. Your answers to our questions will never become part of your medical record, never be given to health care providers or health plan administrators, and never be released outside of Kaiser Permanente in a way that you can be identified.
What are the benefits and risks of participating in this research study?You may not receive any direct benefit. But your participation may help other people facing cancer in the future.
The only small risk is a potential loss of privacy of your information. However, our research staff are trained on how to keep all participants’ information completely private. Any information that we get from you in connection with this study study will be kept confidential and we will follow all legal requirements for confidentiality.
What if I don’t want to participate? Will my medical coverage be affected?You don’t have to participate. It will not affect your medical treatment or health plan benefits as a Kaiser Permanente member if you don’t.
Who can I call if have other questions about the study?Please call Research Project Coordinator John Chang toll free at 1-866-422-7212 and leave a message. Or email him at CARESstudy@kp.org with your questions.
If you have any questions about your rights as a research study participant, you can call the Kaiser Permanente Southern California Institutional Review Board Director Armida Ayala, PhD, at 626-405-3665.
Who are the key personnel involved in this study at Kaiser Permanente?Dr. Reina Haque, PhD, MPH, is a senior cancer epidemiologist in the Department of Research & Evaluation at Kaiser Permanente Southern California. John Chang, MPH, is the research project coordinator. Surveys will be conducted by DRG, a market research company with extensive experience in survey-based research.
The survey asks about your own experiences as you manage your symptoms while you are receiving cancer treatment. That information is not available in your medical record and your doctor may not know this information about you.
DRG (Dieringer Research Group) is a market research firm that we are using to conduct the survey. DRG regularly conducts research surveys on behalf of Kaiser Permanente. They will keep your name and contact information private and secure.
If you have questions about DRG, you can call Research Project Coordinator John Chang at 1-866-422-7212 or email him at CARESstudy@kp.org.
How will you use my name, address, and phone number?In general, for this study you will only be identified by your survey number. The only reason we will use your name, address, or phone number is if we need to contact you to better understand anything in your answers to the surveys.
How can I be sure my information won’t be shared without my permission?Your answers are strictly private. Any reports from the study will describe whole groups of members, and you cannot be identified as an individual. Your answers to our questions will never become part of your medical record, never be given to health care providers or health plan administrators, and never be released outside of Kaiser Permanente in a way that you can be identified.
What are the benefits and risks of participating in this research study?You may not receive any direct benefit. But your participation may help other people facing cancer in the future.
The only small risk is a potential loss of privacy of your information. However, our research staff are trained on how to keep all participants’ information completely private. Any information that we get from you in connection with this study study will be kept confidential and we will follow all legal requirements for confidentiality.
What if I don’t want to participate? Will my medical coverage be affected?You don’t have to participate. It will not affect your medical treatment or health plan benefits as a Kaiser Permanente member if you don’t.
Who can I call if have other questions about the study?Please call Research Project Coordinator John Chang toll free at 1-866-422-7212 and leave a message. Or email him at CARESstudy@kp.org with your questions.
If you have any questions about your rights as a research study participant, you can call the Kaiser Permanente Southern California Institutional Review Board Director Armida Ayala, PhD, at 626-405-3665.
Who are the key personnel involved in this study at Kaiser Permanente?Dr. Reina Haque, PhD, MPH, is a senior cancer epidemiologist in the Department of Research & Evaluation at Kaiser Permanente Southern California. John Chang, MPH, is the research project coordinator. Surveys will be conducted by DRG, a market research company with extensive experience in survey-based research.
In general, for this study you will only be identified by your survey number. The only reason we will use your name, address, or phone number is if we need to contact you to better understand anything in your answers to the surveys.
Your answers are strictly private. Any reports from the study will describe whole groups of members, and you cannot be identified as an individual. Your answers to our questions will never become part of your medical record, never be given to health care providers or health plan administrators, and never be released outside of Kaiser Permanente in a way that you can be identified.
What are the benefits and risks of participating in this research study?You may not receive any direct benefit. But your participation may help other people facing cancer in the future.
The only small risk is a potential loss of privacy of your information. However, our research staff are trained on how to keep all participants’ information completely private. Any information that we get from you in connection with this study study will be kept confidential and we will follow all legal requirements for confidentiality.
What if I don’t want to participate? Will my medical coverage be affected?You don’t have to participate. It will not affect your medical treatment or health plan benefits as a Kaiser Permanente member if you don’t.
Who can I call if have other questions about the study?Please call Research Project Coordinator John Chang toll free at 1-866-422-7212 and leave a message. Or email him at CARESstudy@kp.org with your questions.
If you have any questions about your rights as a research study participant, you can call the Kaiser Permanente Southern California Institutional Review Board Director Armida Ayala, PhD, at 626-405-3665.
Who are the key personnel involved in this study at Kaiser Permanente?Dr. Reina Haque, PhD, MPH, is a senior cancer epidemiologist in the Department of Research & Evaluation at Kaiser Permanente Southern California. John Chang, MPH, is the research project coordinator. Surveys will be conducted by DRG, a market research company with extensive experience in survey-based research.
You may not receive any direct benefit. But your participation may help other people facing cancer in the future.
The only small risk is a potential loss of privacy of your information. However, our research staff are trained on how to keep all participants’ information completely private. Any information that we get from you in connection with this study study will be kept confidential and we will follow all legal requirements for confidentiality.
You don’t have to participate. It will not affect your medical treatment or health plan benefits as a Kaiser Permanente member if you don’t.
Who can I call if have other questions about the study?Please call Research Project Coordinator John Chang toll free at 1-866-422-7212 and leave a message. Or email him at CARESstudy@kp.org with your questions.
If you have any questions about your rights as a research study participant, you can call the Kaiser Permanente Southern California Institutional Review Board Director Armida Ayala, PhD, at 626-405-3665.
Who are the key personnel involved in this study at Kaiser Permanente?Dr. Reina Haque, PhD, MPH, is a senior cancer epidemiologist in the Department of Research & Evaluation at Kaiser Permanente Southern California. John Chang, MPH, is the research project coordinator. Surveys will be conducted by DRG, a market research company with extensive experience in survey-based research.
Please call Research Project Coordinator John Chang toll free at 1-866-422-7212 and leave a message. Or email him at CARESstudy@kp.org with your questions.
If you have any questions about your rights as a research study participant, you can call the Kaiser Permanente Southern California Institutional Review Board Director Armida Ayala, PhD, at 626-405-3665.
Dr. Reina Haque, PhD, MPH, is a senior cancer epidemiologist in the Department of Research & Evaluation at Kaiser Permanente Southern California. John Chang, MPH, is the research project coordinator. Surveys will be conducted by DRG, a market research company with extensive experience in survey-based research.