Protecting Your Privacy

How will the study protect my privacy?

There are many ways that study teams protect participant privacy. Some examples include:

• Using a random ID number instead of your name on study materials
• Only having conversations about your study participation in a private space
• Keeping study records in a locked space and using password-protected computers
• Storing study information on computers behind electronic protection (also called a “firewall”)

However, a study team can never promise that your information is totally protected. No matter how hard they try, there may be cases, such as running into someone you know in the study clinic, that accidentally share that you are in a study. If you have concerns about how your privacy will be protected, talk about these concerns with the study staff so you can make a decision that is right for you.

Participating in research in the digital age

Sometimes the study team and participants need to contact one another. There are many ways to communicate, including phone, text, and email. Some ways ensure better privacy than others.

If you would like a Kaiser Permanente Washington study team to communicate with you electronically, here is some information for you to think about:

• The best way to communicate between a study team and participant is always in a real conversation, either in person or over the phone.
• Do you share a cell phone or an email address with others? If so, are you comfortable with them knowing you are in a study and what that study is about?
• Text and email messages can be accidentally deleted, shared, or forwarded.
• Text and email messages from participants to study staff don’t always reach the person quickly.
• Health information should never be included in emails or texts. This practice helps protect your privacy. 

Kaiser Permanente Washington study staff will discuss what kind of communication participants can use and expect for each study.

If you are a study participant and have an urgent need to contact a study team, you should always use the phone number on your Informed Consent form.