As required by law, study-related records with your identifying information will be kept confidential. Safety measures for the access, security, and privacy of your information have been put in place by law. Unless the law requires it, your name, email address, or any other direct identifying information will not be used to identify you.
Purpose of Authorization
We have rules to protect information about you. Federal and state laws also protect your information. By signing the consent form or a separate “HIPAA” form, you are giving your permission, called your “authorization,” for the use and disclosure of information protected by the law.
You must sign a Protected Health Information Authorization if you want to be in a study. When you sign the form, you give permission for the use and sharing of your Protected Health Information “PHI” for the study. PHI is health information that identifies you. Your authorization is beneficial and important for each study. Without your authorization, you will not be able to be in a study.
Using and Sharing PHI
Each study will collect information about you. This information may include your email address, or date of birth. These are examples of identifiable information. The people doing the research may keep a copy of the information, but it cannot be shared without telling you in the form first.
Study results without the identifiable information may be shared in medical journals and at scientific meetings. Your records will be confidential. No one will share your identity in a medical journal or at a scientific meeting. Results from each study may or may not be sent to you, but you will be told in the form.
Who Can Receive and Use Your Study Information?
It is possible that people outside the Jaeb Center may need to see or receive your information from this study. Some examples include the government, committees that monitor safety, other sites in the study, and companies that sponsor the study. In most cases the information will have a code number with it instead of your name or email address.
There are some situations where the information will not have a code number but may include your name, email address, or phone
Other Considerations
The information collected in a study may be used in future studies without additional permission from you. This may include research done by other researchers. The information that may be shared will not contain any information that could identify you. There may still be a chance that someone could identify you, but this is not likely. The study results may also be made public. These results will not have any information that could identify you.
Can You Cancel Your Authorization?
You may cancel your permission for the use and sharing of your study PHI at any time. You will need to contact the JCHR IRB to cancel this. When you cancel your permission or when you withdraw from a study directly, you are no longer part of the study. No new information about you will be gathered for that study. The Jaeb Center will receive all the information that was collected for that study up to the time that you cancel or withdraw from the study.
When Will the Use and Sharing of Your PHI Stop?
Some of your study PHI does not have a code number with it. Your permission for the use and sharing of your PHI lasts 50 years from the date that you sign this form or until the end of the study, whichever comes first. The rest of your study information does have a code number with it. When it is collected, it becomes part of a research report. Your permission for the use and sharing of this coded information will never end. This coded data does not have your name or email address.
