About the research program
What is Together For Health - Virginia?
Together For Health – Virginia is a research program that will assist Virginia Commonwealth University (VCU) Massey Cancer Center to improve cancer prevention, education, and outreach in Virginia.
Who runs Together For Health - Virginia?
The research program is run by researchers from VCU’s Massey Cancer Center located in Richmond, Virginia.
What is the purpose of the research program?
We are collecting information from people like you to better understand the social, psychological, behavioral, and environmental factors may be helping or hurting health in Virginia. By looking for patterns in the data, we aim to find ways to improve health and health care for all Virginians.
How many people are being surveyed?
Our goal is to enroll at least 2,000 Virginians in the program.
Why should I join the research program?
Together For Health - Virginia is an important research program that collects information from people like you to understand risk factors that contribute to cancer in your community. If you decide to join, your input will help us develop better health care practices and services.
Do I need to participate?
Participation is completely voluntary.
I am interested in participating. Can I take part in the research program?
If you are over the age of 18, and reside in Virginia, you can participate in the research program.
If I participate, do I need to finish the whole survey?
If you decide to participate, you do not have to answer all the survey questions. You may skip any question that you do not wish to answer.
Do I need to be getting healthcare from VCU Health System to be a part of this research program?
If you live in Virginia, you can participate in the research program. You do not need to be getting your healthcare from VCU Health System.
Do I need to have health insurance to join the research program?
No, you do not need to have health insurance to be able to join the research program.
What are the costs of being in the research program?
There are no costs to you for your participation in this research program.
What are the risks of being in the research program?
There are few risks to participating in the research program. You may skip any question that you do not wish to answer. You may also take back your consent to participate in this research program at any time.
There is a chance that someone might be able to access the information and identify who you are even without personal information being part of the data. This is called a data breach. We think that chance of this happening is very small, but it cannot be ruled out completely.
What are the benefits of being in the research program?
The first 1,000 participants who enroll into the Together for Health – Virginia Research Program via the web portal or mobile app and complete all survey modules will receive a $10 electronic gift card from Walmart, and will be provided with the opportunity to enter into a drawing to win a Fitbit fitness tracker.
Additionally, you will be able to share the survey information you provided with your healthcare provider, if you choose. You will have the option to learn about additional study opportunities. Finally, you will be helping researchers gain information that may help future generations.
What information will you get from me?
If you decide to join the research program, we will first ask you some basic information like your name, date of birth, phone number, and email address. The survey will ask about your health, home, family and work. It will also ask how you get health information, and how you use healthcare services.
Researchers may add data from other sources to the information you provide us, for example, environmental data and pharmacy records. This will allow researchers to assess more factors that might affect your health. Based on your residential address and/or personal information that you have provided us, we can add data from other sources to your study records. For example, we may add data about how many people live in your community and how close you live to the nearest clinic. We may also use information that identifies you, like your name and date of birth, to add other data that is specific to you, such as your pharmacy records or your health insurance records. If you have a fitness tracker, such as a Fitbit, you can also choose to share that information (like count of steps, sleep tracking data, blood pressure monitoring) within the Together For Health - Virginia app.
What happens with my data?
Your personal identifying information will be kept confidential as required by law. This information will be encrypted and stored separately from other information you provide via the Together For Health - Virginia app on a cloud-based server, operated by Amazon Web Services (AWS). Information that could directly identify you, like name, date of birth, email address, and telephone number, will be removed from your study records and will be encrypted separately on the AWS server, accessible only by authorized members of the study team.
Except when required by law or for your care and safety, you will not be identified. The results of future research studies conducted using your information in the registry may be published in scientific journals or presented at medical meetings, but you will not be personally identified.
Who will use or share protected health information about me?
VCU and VCU Health are required by law to protect your identifiable health information. By consenting to this research program, you authorize VCU/VCU Health to use and/or share your health information for this research only with those who are approved to do so to conduct, monitor, and oversee the research.
Will my information be shared with insurance companies?
No, the information you provide will not be shared with your insurance company.
Will taking part in the research program affect my health care?
No, taking part in this research program is unrelated to the type and quality of health care you receive.
Will you sell my personal information?
No, we will never sell any of your information.
Do I have to reveal my protected health information (PHI)?
You can skip any questions that you do not wish to answer that may reveal your PHI. You may also change your mind and revoke (take back) the right to use your protected health information at any time. If you decide to revoke this authorization, you must write to the study team. Please address this request to: Together for Health – Virginia, Attn: Dr. Bernard Fuemmeler, Box 980430, Richmond VA, 23298-0430.
What if I have questions?
If you have any additional questions, or if you wish to report a problem that may be related to this research program, the project coordinator can be reached by email (firstname.lastname@example.org) or phone (804-628-4649), Monday through Friday, 9 AM - 5 PM. To ask questions, express concerns, report problems, obtain information, or offer input about your rights as a research participant, you may contact: Office of Research and Innovation, Virginia Commonwealth University, 800 East Leigh Street, Suite 3000 Box 980568, Richmond, VA 23298 Telephone: (804) 827-2157.