As you describe your plan to safeguard confidentiality in your IRB proposal, keep in mind these suggestions:
If identifying information is not necessary, do not collect it.
If it is necessary, collect it in a way that is easy to separate
from the data (such as on a separate sheet that can easily be detached
from the surveys). This is particularly important in light of the IRB
regulations regarding the storing and archiving of data (see below).
Separate the identifying information from the data as soon as it is
no longer needed (as soon as you have placed a subject number on the
survey and on the identifying sheet that will allow you to match them
up, for example).
Once the identifying information is removed, store the identifying
information (such as the list of names and their matching subject
numbers) separately from the data.
Destroy the identifying information once it is no longer needed
(such as at the conclusion of the study, or after all the data has been
collected).
The more sensitive and personal the information collected is, the
more the researcher must make careful and detailed plans for
safeguarding confidentiality.
Some definitions to keep in mind:
- Anonymous – no identifying information of any kind is at any time linked to the data.
- Confidential – not anonymous, but effective steps are taken to prevent the identities of participants from being revealed.
Collecting fully anonymous data in surveys with Qualtrics:
For
sensitive information that you want to collect fully anonymously, it is
important to make sure that your survey does not record the IP address
of the participant’s computer. If you go to "Survey Options" in
Qualtrics and select "Anonymize Response," then the IP addresses will
not be collected and your data can be fully anonymous.
IRB RULES REGARDING STORING AND ARCHIVING DATA
- Anonymous data may be archived (stored) indefinitely.
- Data that contains any sort of identifiers (including Confidential
Participant Codes, initials, or any codes that are derived from personal
information such as initials, birthdays, etc.) may be kept for a
maximum of 3 years with initial IRB approval of a project. The IRB will
not approve a period longer than 3 years in the initial project
application.
- Data may be kept longer than 3 years if the researcher then submits a
continuing review application to the IRB asking for permission to keep
the data for a specific additional period of time.
- Tip: In the section of the IRB Application Template that asks
for information about where and how the data will be stored, you should
state that the data will be stored in a (specified) secure location for
a specified period of time (no more than 3 years), and that following
the removal of all identifying information the data will be archived
indefinitely.