Healthy Oregon Project (OHSU IRB 18473), Official: 10/16/20
The Healthy Oregon Project (HOP) study data collected through the app will be transferred electronically and stored securely in the google cloud in the Axon Medable instance that is HIPAA compliant.
We will take steps to keep your personal information confidential, but we cannot guarantee total privacy.
We will create and collect health information about you as described in consent form. Health information is private and is protected under federal law and Oregon law. By agreeing to be in this study, you are giving permission (also called authorization) for us to use and disclose your health information as described in this form.
The investigators, study staff and others at OHSU may use the information we collect and create about you in order to conduct and oversee this research study and store it in a repository to conduct future research.
When we send information outside of OHSU, they may no longer be protected under federal or Oregon law. In this case, your specimens or information could be used and re-released without your permission.
We may release this information to others outside of OHSU who are involved in conducting or overseeing this research, including:
- The Office of Human Research Protections (OHRP), a federal agency that oversees research in humans
- The National Cancer Institute (NCI)
- National Institutes of Health
- The Office for Human Research Protections, a federal agency that oversees research involving humans
- Other researchers who may use your information for future research studies, this is required for participation.
Those listed above may also be permitted to review and copy your records.
We may also share your information with other researchers, who may use it for future research studies, this is required to participate in this study.
We will not release information about you to others not listed above, unless required or permitted by law. We will not use your name or your identity for publication or publicity purposes, unless we have your special permission.
OHSU complies with Oregon state requirements for reporting certain diseases and conditions to local health departments.
Your genetic information may be shared in a public online database for future research. The database will not contain any information that directly identifies you, such as your name, address, or birth date, so it is unlikely that someone would know the genetic information came from you. In the future, people may develop ways to identify you or your blood relatives from this information, but currently, there is not a way to identify you without having additional information to compare to it.
We may continue to use and disclose your information as described above indefinitely.
We may collect your device model, time stamps from emails we send you, and other metrics that help us optimize our study in relation to our communications with you.
We may also send you communications regarding our study including new surveys, study updates and educational materials via emails, text message, phone, or mail. Emails and text messages are not encrypted, but will not include your medical information.
