HRPP Newsletter February 2024

How Identifiable Are Your Data?

You might need to know how identifiable your data are if you’re sending or receiving data, or if you want to make sure your data are anonymized when you’re ready to publish your results. In your protocol or ARROW application, you will also need to describe how identifiable your stored or banked data or specimens will be. There are 3 levels of identifiability: directly identifiable, coded, or deidentified/anonymized. The Investigator Manual contains guidance to help you understand these levels of identifiability (directly identifiable, coded, or deidentified/anonymized). The level of identifiability depends on the identifiers that are associated with the data. Here are some factors that you’ll need to consider:

• Does HIPAA apply to the study?
• Is there a code to link data to identifiers? Who has access to the code?
• Do the people in the study come from a small group, such as members of a college sports team, or people with a very rare genetic variant?

Questions? Contact asktheirb@hsirb.wisc.edu or (608) 263-2362 for the IRB analyst on call.

Toolkit Updates 

The latest round of revisions went live at the beginning of this month. Updates to the Investigator Manual, Reliance Manual, and various templates were made. The addition of a self-experimentation consent template was added to the Toolkit library. Except for the manuals and templates, the Toolkit documents have changed to a more accessible format.

Reminder: Research Use of CareEverywhere not Permitted

The Epic CareEverywhere user agreement states that CareEverywhere may not be used for research recruitment or to pull records for research purposes. CareEverywhere may only be used to pull new records over for continuity of care. Once records have already been pulled for clinical care, they become part of the UW Health Epic instance as outside documents, which can be used for any lawful purpose.