Sensitive Data


Research studies involving sensitive data collection typically require implementing additional protective measures before sharing data. These sensitive data types demand a heightened level of protection due to the inherent risks associated with disclosure. To support researchers in sharing their data while maintaining the utmost privacy and protection of sensitive information, the HEAL Stewards developed a comprehensive guide.

This guide is specifically designed to serve HEAL research investigators and is not intended to be the definitive 'one-stop-shop' for the most up-to-date guidelines. The guide offers valuable resources and guidance to empower investigators to safely share various sensitive data types, provides an overview of commonly encountered HEAL data types, and outlines current and future resources to facilitate secure data sharing. However, it is paramount that investigators also consult the authoritative government and organization resources relevant to their field of research. If an inquiry or issue falls beyond the scope of the HEAL Stewards' expertise, we will direct the investigator to the appropriate organization or personnel.

To view more information on a sensitive data type, please click the boxes below.

Protected Health Information (PHI)

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) regulations, specifically the Privacy Rule, are crucial for protecting individual medical information privacy and security in studies involving Protected Health Information (PHI). These guidelines ensure sensitive health data is responsibly handled and safeguarded according to federal standards. The HIPAA Privacy Rule covers the scope, application, definitions, consent requirements, penalties for non-compliance, and patients' rights to access and control their PHI.


Resources


  • HIPAA Privacy Rule Summary

  • U.S. DHHS Guidance for De-identification of PHI