Data Release
Overview
The iPHD will provide de-identified data where feasible or a HIPAA-compliant limited data set (LDS) to researchers approved to receive data from the iPHD. Please use the variable lists on the Data Page to determine which variables are available for release. The variables provided for each approved research project will be determined in accordance with the minimum necessary data standard.
De-identified Data
De-identified data: Section 164.514(b) of the HIPAA Privacy Rule provides the standard for de-identification of protected health information. Under this standard, health information is not individually identifiable if it does not identify an individual and if the covered entity has no reasonable basis to believe it can be used to identify an individual. De-identified datasets using the “Safe Harbor Method” exclude 18 specific identifiers of individuals or of their relatives, employers, or household members of the individual, as listed below:
1. Names | 7. Device IDs & serial numbers | 13. Biometric identifiers |
2. Geographical Data (smaller than a state) | 8. Email addresses | 14. Health plan beneficiary IDs |
3. All dates (except year) | 9. Web URLs | 15. Full face & comparable images |
4. Telephone numbers | 10. Social security numbers | 16. Account numbers |
5. Vehicle IDs & serial numbers | 11. IP addresses | 17. Certificate/license numbers |
6. Fax numbers | 12. Medical record IDs | 18. Any other unique identifier |
Limited Data Set (LDS)
Limited data set (LDS): Pursuant to 45 C.F.R. § 164.514(e) (2), an LDS excludes most of the identifiers described above but may include one or more of the following:
- Dates such as admission, discharge, service, date of birth, date of death
- State or zip code
- Ages in years, months or days or hours
Limited data sets released by the iPHD will include only the minimum necessary information needed to complete the approved research project and use of the LDS will be governed by a Data Use Agreement.
Please see the Department of Health and Human Services, Health Privacy Information website or the HIPAA legislation for additional information.
Data Linkages
iPHD provides linked datasets with person-level study IDs that allow researchers to track individuals within a dataset and across different data sources without reidentification. Investigators are responsible for defining and creating their cohorts using the linked data iPHD provides.
Requests for linkages between iPHD data and other third-party datasets are evaluated for technical feasibility and HIPAA-compliance to ensure linkages do not enable the re-identification of individuals. Additional fees may apply for linking external data. For those receiving a fee waiver, please note that these additional linkage fees may not be covered.
iPHD Data in Brief