Who should I contact if I need help de-identifying my research data?

If you need help de-identifying your research data, the first point of contact should be IU’s RCdata librariansContact information for IU Research Data Services Librarians RC data librarians , who can provide guidance on best practices and available resources for data anonymization. They can help you understand de-identification techniques, such as removing direct identifiers, generalizing indirect identifiers, and applying statistical methods to reduce the risk of re-identification. They can also direct you to appropriate tools and software designed for de-identifying datasets, particularly in sensitive research areas like health and human subjects research.

For projects involving RCprotected health information (PHI)IU policy regarding use of protected health information in research RC protected health information (PHI) or personally identifiable information (PII), researchers should also consult IU’s RCInstitutional Review Board (IRB)Compliance policies for human subjects research RC Institutional Review Board (IRB) to ensure compliance with ethical and regulatory standards, such as RCHIPAAHIPAA compliance information RC HIPAA . The IRB can help determine if additional safeguards, such as controlled access or data-use agreements, are necessary before sharing or publishing de-identified data.

If your data requires advanced de-identification techniques, consult with a statistician to assess the disclosure risk and determine whether the dataset can be de-identified effectively. Work with your IRB and IU RCData StewardData Stewards are responsible for the governance of each subject area RC Data Steward s to determine what data can be shared or not, and statisticians can advise on how to implement the plan. See the list below for consultation options: 

IU Bloomington: 

• RCIndiana Statistical Consulting CenterStatistical consulting for IU staff, faculty & graduate students RC Indiana Statistical Consulting Center
  • An ISCC consultant can assist you with de-identifying your data! Your ISCC consultant can 
    • Write the statistical code for de-identifying data for you 
    • Teach you how to write code to de-identify data yourself 
    • And more!
• RCBiostatistics Consulting CenterProvides study design & data analysis for health-related research RC Biostatistics Consulting Center

IU Indianapolis:

• RCBiostatistics & Health Data ScienceSupport for grant/protocol & budget development & study design & analysis RC Biostatistics & Health Data Science

By working with these university resources, researchers can ensure that their data is de-identified adequately while complying with institutional, legal, and ethical requirements.