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New: Data Management and Sharing Policy

Planning for Data Sharing

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.  Planning for data sharing at the design phase of a research project can make compliance with these requirements much easier. The steps described below are designed to assist JHU researchers in developing a comprehensive data management and sharing plan. More detail is available through the Guide for Data Management and Sharing.

Note that JHU has a 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.

Steps for Data Planning

Step 1: Identify Requirements for Data Sharing

Many US funders, both federal and private, now require grantees to provide a data management or sharing plan and to have their data available at the end of funded projects. NIH announced a new policy that goes into effect January 2023. NSF and other major funders also have requirements related to data sharing.  The following organizations offer overviews of data-related funder mandates and public access plans.

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.  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. General principles to consider in determining what data to share openly are listed below.  These principles apply across data types and include data that are not 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 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.

Step 3: Identify an Appropriate Data Sharing Repository

Funders may or may not be explicit about where to share data. The following resources can aid in the selection of a data sharing repository. 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. JHU Data Services and Welch Medical Library can help locate appropriate repositories.

Data Sharing Repositories Links to lists of NIH-supported and generalist repositories and resources related to data sharing.

JHM Data Sharing Tiers Guidance related to the sharing of JHM clinical data in a repository.

JHU Data Archive A repository for Johns Hopkins researchers to openly share, archive, and get citations for their data.

RE3data.org A searchable registry of research data repositories.

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. Here are some helpful resources on inclusion of data sharing costs in grant budgets:

NOT-OD-21-015 – Supplemental Information to the NIH Policy for Data Management and Sharing: Allowable Costs for Data Management and Sharing Outlines categories of allowable NIH costs associated with data management and sharing.

NIH Grants Policy Statement Highlights allowable and unallowable costs under conference grants.

Council on Government Relations NIH Data Management and Sharing Policy Matrix Provides instructions regarding allowable costs as well as several other key areas.

Step 5: Update as plans change

The NIH requires 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 NIH.

Where to Go for Help

JHU Data Services Provides free consultations and a wealth of resources to members of the Johns Hopkins community.

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

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.

The National Science Foundation (NSF) Coming Soon
NIH Data Sharing Guidance NIH Data Sharing Guidance

Contact

Johns Hopkins University
Research Administration

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Baltimore, MD 21218

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

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