# The Sheridan Libraries

**Source**: https://guides.library.jhu.edu/protecting_identifiers
**Parent**: https://dataservices.library.jhu.edu/resources/

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# Protecting Human Subject Identifiers

Introduction to concepts and basic techniques for disclosure analysis and protection of personal and health identifiers in research data for public or restricted access, following applicable JHU data governance policies. See Overview section for details.

- [Protecting Identifiers Overview](https://guides.library.jhu.edu/protecting_identifiers/overview)
- [What is Disclosure Risk?](https://guides.library.jhu.edu/protecting_identifiers/definitions "Definition of terms")
- [Grant Proposals and IRB](https://guides.library.jhu.edu/protecting_identifiers/proposal_stage)
  - [JHM Data Trust Council](https://guides.library.jhu.edu/protecting_identifiers/datatrust "Overview of Data Trust and their role in data sharing")
- [Data Collection & Analysis](https://guides.library.jhu.edu/protecting_identifiers/collection_analysis "Protecting identifiers during data collection and analysis")
  - [Secure Storage Choices](https://guides.library.jhu.edu/c.php?g=836385&p=5973320 "Options for storage choices that meet HIPAA and security standards for human subjects and other sensitive files.")
- [Steps for De-identifying Data](https://guides.library.jhu.edu/protecting_identifiers/de-id_steps "Overview of tasks and procedures for de-identifying data")
  - ["Demographic anonymization"](https://guides.library.jhu.edu/c.php?g=836385&p=11204576 "A method of de-identification that is a step above HIPAA Safe Harbor criteria that may be suitable for controlled access repositories, such as Vivli")
- [Intro to Advanced Techniques](https://guides.library.jhu.edu/protecting_identifiers/advanced "An overview of some of the advanced disclosure protection techniques")
- [Software for De-identification](https://guides.library.jhu.edu/protecting_identifiers/software)
- [Further Resources](https://guides.library.jhu.edu/protecting_identifiers/resources "Links and citations for additional resources and related literature")

## Data Services Profile

We are here to help you find, use, manage, visualize and share your data. [Contact us](mailto:dataservices@jhu.edu) to schedule a consultation. View and register for upcoming [workshops](https://dataservices.library.jhu.edu/training-workshops/). Visit our [website](http://dataservices.library.jhu.edu/) to learn more about our services.

## Guidelines for Protecting and Removing Personal and Health Identifiers

##### **Guidelines for Protecting and Removing Human Subject Identifiers**

Funding agencies, publishers, and research communities are increasingly encouraging researchers to share data, particularly through online repositories, while respecting IRB and federal restrictions against disclosing identifiers of human subjects. This guide presents initial steps for protecting and removing identifiers. Fully protecting data from inappropriate disclosure is not always possible without professional help, especially for health data. Taking initial steps at de-identifying data, however is recommended for:

- Protecting data during research projects
- Preparing data for vetted collaborators, restricted-access data repositories or public access (if reviewed and approved for release)
- Preserving datasets to support published findings and facilitate IRB approval for re-use.

These guidelines are provided for informational purposes. JHU investigators preparing datasets for public or restricted external access should follow applicable JHU data governance policies, with guidance from  [**IRB**](https://research.jhu.edu/jhura/compliance/human-subjects/) and the **[Johns Hopkins Privacy Office](https://intranet.insidehopkinsmedicine.org/privacy_office/privacy_topics/)**. For clinical and health data, the **[SOM IRB](https://www.hopkinsmedicine.org/institutional_review_board/)** and the [**JHM Data Trust Council**](https://ictr.johnshopkins.edu/programs_resources/programs-resources/i2c/data-trust/) have additional requirements regarding approval of disclosure protection prior to sharing de-identified or restricted datasets. Please refer to the [JHM Data Trust Council section](https://guides.library.jhu.edu/protecting_identifiers/datatrust) of this guide and the [Data Trust FAQ](https://intranet.insidehopkinsmedicine.org/data_trust/research-data-requests.html) for details.

This guide is organized by **topic** and **phase of research.**

- [Overview of **personal and health identifiers and disclosure risk**](https://guides.library.jhu.edu/protecting_identifiers/definitions)
- [Disclosure protection at the **project planning stage: Grant proposals, IRB forms**](https://guides.library.jhu.edu/protecting_identifiers/proposal_stage)
- **[JHM Data Trust Council compliance](https://guides.library.jhu.edu/protecting_identifiers/datatrust)**
- [Disclosure protection during **data collection and analysis phase**](http://guides.library.jhu.edu/protecting_identifiers/proposal_stage)
- **[Secure storage choices](https://guides.library.jhu.edu/c.php?g=836385&p=5973320)**
- [Preparing de-identified datasets for sharing: **5 steps for disclosure risk protection**](https://guides.library.jhu.edu/protecting_identifiers/de-id_steps)
- [Introduction to **advanced de-identification techniques**](https://guides.library.jhu.edu/protecting_identifiers/advanced)
- **[Further resources](https://guides.library.jhu.edu/protecting_identifiers/resources)**

Training in human subject data protection at JHU:

- In-person: "De-identifying Human Subjects Data for Sharing."  A 90-minute workshop covering topics in this guide. View the [[current schedule here](https://dataservices.library.jhu.edu/training-workshops/research-data-management-sharing/)].   Trainings may also be scheduled for research groups and departments.
- Online modules: Available to JH affiliates through Canvas: [De-identifying Human Subjects Data for Sharing](https://learnmore.jhu.edu/browse/libraries/courses/deidentifyinghumansubjectdata)

Copyright 2019 by Johns Hopkins University Data Services. These materials may not be republished, re-purposed, or reposted without permission from JHU Data Services. Contact: [dataservices@jhu.edu](mailto:dataservices@jhu.edu?subject=Copyright%20use%20of%20de-identification%20libguide).

## License

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|  | These materials are licensed under a Creative Commons [Attribution-NonCommercial-ShareAlike 4.0 International License](https://creativecommons.org/licenses/by-nc-sa/4.0/), attributable to [Data Services](https://dataservices.library.jhu.edu/), Johns Hopkins University. |

- [**Next:** What is Disclosure Risk? >>](https://guides.library.jhu.edu/protecting_identifiers/definitions)