' New: Data Management and Sharing | JHURA

Website Navigation for Screen Readers

Click to Return to Homepage
Menu

Topics On This Page

Related Pages

New: Data Management and Sharing

JHU is participating in the FDP Pilot Program to help select a Data Management Sharing Plan template. Click here how you can play a part.

Introduction

Increasingly, funders and publishers require broad sharing of scientific data to increase the impact and accelerate the pace of scientific discovery. These requirements apply to all projects in which data is collected, whether or not the data is derived from human research participants.

The steps below are designed to assist JHU researchers in navigating new funder requirements and developing a comprehensive data management and sharing plan. For information on the specific NIH Data Sharing Plan and policy, please visit the JHURA page: 2023 NIH Data Sharing Policy Guidance.

General FAQs About Data Management and Sharing

Where should I start?

Review the below overview designed to inform JHU researchers of the new requirements and things to consider when developing a comprehensive data management and sharing plan. Please note that JHU has an existing policy on data access and retention, as well as rules for the responsible conduct of research., which include requirements for data storage, retention, and ownership.

Individual schools and sponsors may have additional requirements. For more context, read the initial JHU communication on the new data management and sharing policy published on 11/11/22.

Who do these requirements apply to?

These requirements apply to all projects in which data is collected, whether or not the data is derived from human research participants.

Why are these data management plans required?

The broad sharing of scientific data is being implemented to increase the impact and accelerate the pace of scientific discovery.

When should I start working on my data management and sharing plan?

Ideally, you should start working on the plan for data sharing during the design phase of a research project. This can make compliance with these requirements much easier.

How do I develop a plan?

To learn how to develop a comprehensive data management and sharing plan visit the Welch Medical Library NIH Data Management and Sharing Policy page.

Please note that the Welch guide is intended for JH Medicine divisions navigating the new Data Management and Sharing Policy, so details with IRBs and (?) may differ based on your division.

The Five Steps to Data Sharing

Step 1: Identify Requirements for Data Sharing

Step 1: Identify Requirements for Data Sharing

Researchers are responsible for monitoring compliance with their plans and reporting progress on those plans as part of their annual progress report. For projects involving human-derived data that qualifies as human subjects research, the data management and sharing plan will be part of the IRB-approved protocol and deviations from the plan would be reportable to the IRB per standard reporting practices.

Step 2: Consider Ethics, Compliance, and Consent

In many cases, regulations, contractual obligations, and ethical norms impact what scientific data can or should be shared.  For human-derived data, research participant consent forms should detail specifically what data will be shared and how broadly it will be shared. Note that funders and Institutional Review Boards may offer sample consent language to facilitate ethical compliance with data sharing requirements. The researcher must ensure that the language aligns with the planned sharing of data.

General principles to consider in determining what data to share openly are listed below.  These principles apply across data types and whether or not the data is derived from human research participants.

  • Data from outside sources can only be shared in a manner permitted by the applicable funding or collaboration agreements.
  • Sharing plans must adhere to governing laws or policies from tribal nations or other countries as applicable.

For research involving human research data collected through Johns Hopkins Medicine, review by the Data Trust will be required as set forth in the Data Trust Review of Research and Quality Data Requests guidance

  • For human-derived data:
    • Unconsented data from human participants may only be shared in a controlled manner.
    • Limitations or prohibitions in informed consent documents will govern how data can be shared.
    • Special considerations will be required for data from vulnerable populations, such as pregnant people and children.
    • Data Use Agreements (DUAs) may be required or recommended to imporse limitations on the use or disclosure or protected or confidential information
    • Steps should be taken to protext human subject identifiers

Step 3: Identify an Appropriate Data Sharing Repository

Funders may or may not be explicit about where to share data. When choosing a repository, consider how well it aligns with any ethical and regulatory considerations relevant to your data. Also consider any repository-specific requirements for data. These may impact the formatting of data, and accounting for these requirements may inform the project budget, organization of research data, the collection of metadata, and the selection of supporting systems.

Step 4: Budget for Sharing

Many funders allow costs related to data sharing to be included in the grant budget. Consider what costs the project will incur as a result of sharing data. These include costs for data preparation, repository subscription or signup, and infrastructure.

Step 5: Update as Plans Change

Funders will require that investigators modify data sharing plans during the course of an award to reflect any changes in the management and sharing of scientific data.  Please note that post-award revisions to a data sharing plan must be reviewed and approved by the funder.

Resource Bank

JHU Guidance

JHU

JHU Data Services

JH Medicine

Welch Medical Library provides expert information services to faculty, staff and students in Johns Hopkins Medical Institutions.

Sponsor Guidance

NIH

NSF

Council of Government Relations (COGR)

Other

  • FAIRSharing: A searchable database includes many international and private funder requirements, in addition to U.S. funders.
  • Re3data: A searchable registry of research data repositories

Where to Go for Help

If you need more help, we recommend you reach out to JHU Data Services or the Welch Medical Library. Learn more about their offerings below.

JHU Data Services at the Johns Hopkins University Sheridan Libraries supports your success in finding, using, visualizing, managing, and sharing data. Through consultations and trainings, they help you in two major areas:

Data Management and Sharing Plan Preparation

  • Write a data management and sharing plan with expert advice to improve the competitiveness of your grant proposal.
  • Use the DMPTool, a free web-based platform, for developing your data management and sharing plan. Data Services can provide feedback on your plan through the DMPTool as well.

Data Sharing

  • Learn about de-identifying human subject data to practice ethical research and comply with requirements.
  • Share your data via the Johns Hopkins Research Data Repository to increase the impact of your research and meet funder and journal policies around open data.

Please email Data Services at dataservices@jhu.edu to request assistance. Visit their website to learn more about their services, including the workshop/self-paced training courses they provide.

Welch Medical Library Provides expert information services to faculty, staff and students in Johns Hopkins Medical Institutions.

Glossary

Glossary
Data Management Plan/Data Management and Sharing Plan: A document that describes how research data will be managed and shared, considering relevant legal, ethical, or technical factors. See NIH Guidance.

Data Sharing: Processes and procedures to ensure that Research Data is made as widely and freely available as possible while safeguarding the privacy of participants, and protecting confidential and proprietary data.

Data Sharing Repository: A publicly-visible resource for sharing data from multiple sources. Research Data Repositories are designed to make data broadly available to the research community under well-defined policies, which may or may not include access controls. Data sharing repositories may offer stable data preservation and citation, indexing and search features, aggregations of similar data to facilitate reuse, and other ways of managing access to data.

Research Data: Alternatively called scientific data, information recorded in physical form, regardless of form or the media on which it may be recorded. Research Data includes-but is not limited to-any records or tools (analysis code or script) that would be used for the reconstruction and evaluation of reported (including internally reported) or otherwise published results. See policy.

Scientific Data (NIH DMS Policy Definition): The recorded factual material commonly accepted in the scientific community as of sufficient quality to validate and replicate research findings, regardless of whether the data are used to support scholarly publications. Scientific data do not include laboratory notebooks, preliminary analyses, completed case report forms, drafts of scientific papers, plans for future research, peer reviews, communications with colleagues, or physical objects, such as laboratory specimens.  See policy.

Contact

Johns Hopkins University
Research Administration

1101 E. 33rd Street, C310
Baltimore, MD 21218

(443) 927-3073
Email: jhura@jhu.eduSend an email to jhura@jhu.edu

  • Contact Us

    • This field is for validation purposes and should be left unchanged.

    • Links

    Website Footer Navigation