Data Management and Sharing

This guide gathers overviews and resources for data management and sharing following the research workflow for data, from preparing data management and sharing plans for grant proposals, conducting research, to sharing research data.

Ethics and Compliance

Check with your divisional IRB office if you are unsure what you can share and review applicable government policies and guidance on protecting PHI.

Divisional JHU IRBs
Policies on Human Participants and Data Sharing

De-identifying Human Subjects Data

With researchers increasingly encouraged or required to share their data, preparing to share datasets with confidential identifiers of people and organizations is particularly challenging.

JHU Data Services Resources

Protecting Human Subject Identifiers Guide: A very comprehensive guide that will introduce you 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.

Webinars: Go to our calendar to find the next live webinar about of common privacy disclosure risks from personal and health identifiers in data and techniques for de-identifying data for external collaborators and public databases. We also discuss preparing consent forms that facilitate data sharing, and keeping identifier data secure during and after projects.

Interactive, online training: JHU Data Services has developed an online training to be taken at your convenience. It provides an overview of the types of identifiers, and how to determine if your data have disclosure risk. You will also learn about available JHU resources to help you with de-identifying data. 

Applications to Assist in De-identification of Human Subjects Research DataA list of de-identification software tools and applications that researchers can use in de-identifying their research data for more public sharing.

Additional Resources

NIH: Protecting Privacy When Sharing Human Research Participant Data: This supplemental information was created to assisting researchers in addressing privacy considerations when sharing human research participant data. It provides a set of principles, best practices, and points to consider for creating a robust framework for protecting the privacy of research participants when sharing data.

NIST de-identification tools: National Institute of Standards and Technology has compiled a list of de-identification tools and also descriptions of each of the tools.

Cancer Image Archive:

National Library of Medicine Scrubber: a freely available clinical text deidentification tool designed and developed at the National Library of Medicine.  Watch this presentation to learn more. 

Consent Language to Allow Data Sharing

Research participant consent forms should detail specifically what data will be shared and how broadly it will be shared, such as by restricted access or in a public data repository. Funders and Institutional Review Boards may offer sample consent language to facilitate ethical compliance with data sharing requirements. Consent should indicate whether shared data are de-identified and any information Participants should know whether the data are de-identified, and consent to any specific data that could reveal their identity, such as audio recordings of their voice.  The researcher must ensure that the language aligns with the planned sharing of data.

Indigenous Peoples

Many indigenous and tribal communities in the U.S. and in other countries have preferred guidelines and ethical considerations for conducting research and sharing data. Here are guidance resources and selected publications: