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.

Advantages to Share Data

While the sharing of research data is encouraged and often expected by funding agencies and journals, sharing research data also has many advantages to scientists. Some benefits are listed below:

  • Enhancing visibility of research
  • Increasing the efficiency of research due to reusability and exposure
  • Enabling researchers to ask new research questions and potentially further science
  • Promoting scientific integrity and replication
  • Enhancing collaboration and community-building

Steps to Sharing Research

Data sharing works best when you have planned for it early in the research process. You will need to think through the following questions before physically sharing data: 

Restrictions to Sharing Research Data

Not all research data can or should be shared due to legal, ethical or practical reasons. Your data management plan should address any restrictions to the sharing of your research data with others. The table below outlines some of these restrictions that should be considered. Information on Johns Hopkins University policies, including IRB requirements and intellectual property definitions can be found on the JHU Policies page.

Even with these potential restrictions, there are likely some subsets of your data that you can share after removing identifying information and/or aggregating your data. 

Legal/Ethical Restrictions Definition
Privacy Information that identifies an individual (e.g., HIPPA, FERPA)
Confidentiality Information that should not be shared (e.g., embargo period, trade secret)
Security Threats to something and someone through release of data
Intellectual Property New, intangible creations (e.g., patents)

Physical Barriers: For help with storing, transferring, and sharing large data sets, please talk to your IT department about possible solutions.  

Data Repositories for Sharing Data

The best way to make your data FAIR is to share via a repository. These are sometimes called data centers or archives. A data repository is a digital system and actively managed service for providing access to data. Repositories vary in their capabilities, but most include the following to varying degrees:

  • Providing a web-accessible interface for discovering and downloading research data collections.
  • Managing preservation of digital objects such as file integrity checking and redundant offsite backups.
  • Use of identifiers, such as DOIs (digital object identifiers) to give datasets persistent location links and citations similar to journal articles
  • Description of projects and files, and ways to include documentation sufficient for using the collection without contacting the researcher.

Please the page "How to Find a Data Repository" to learn more. 

Guidance on How to Share Data

  • Data Trust Resources on Sharing Johns Hopkins Medicine DataData Trust policies and guidance govern the sharing of JHM patient data to support research and operations. JHM data may be shared across JHU or may be shared outside of JHU in many circumstances. The following resources are available to answer questions related to the sharing of data for research, quality, and operations.
  • Data Services Guidance and Training Material
    • Data management resources: Created by Data Services, a series of online guidance around managing your data for sharing including curating and archiving research code and documenting your data. 
    • Data Services Webinars: Live webinars including deidentification training, best practices for data management, and reproducible research.
    • Self-paced, online trainings: We have a series of modules that can be taken at your convenience including documenting data, how to write a data management and sharing plan, open science, and much  more!
  • Data Sharing for Next Generation Sequencing: Online guide created by Welch Medical Library and Data Services on how to manage genetic data for sharing. 
  • Sharing Qualitative Data: Online module from the Qualitative Data Repository on sharing qualitative data including human participant data. This module is one of a number of modules around qualitative data management