LibGuides: Research &amp; Publication in Medicine &amp; Health: Data Sharing

NIH Data Sharing Policy

NIH Data Sharing Policy
NIH has issued a new Final NIH Policy for Data Management and Sharing, which will require NIH funded researchers to prospectively submit a plan outlining how scientific data from their research will be managed and shared. On January 25, 2023, the new policy will come into effect and replace the 2003 NIH Data Sharing Policy currently in effect.
FAQs for the NIH Policy for Data Managemetn and Sharing (DMS Policy)
These FAQs are intended to help clarify implementation of the NIH Policy for Data Management and Sharing (DMS Policy) and will be updated on an ongoing basis.

UIUC Data Sharing Policies & Resources

Data Transfer and Use Agreements (DTUAs)

Representing Data Sharing in Informed Consent

Data Deposit

Illinois Data Bank
The Illinois Data Bank is a public access repository for publishing research data from the University of Illinois at Urbana-Champaign
Selecting a Data Repository
NIH - evaluate and select appropriate data repositories
NIH Supported Scientific Data Repositories
In general, NIH does not endorse or require sharing data in any particular repository, although some initiatives and funding opportunities will have individual requirements. Overall, NIH encourages researchers to select the repository that is most appropriate for their data type and discipline. See Selecting a Data Repository.

Generalist Repository Comparison Chart
This chart is designed to assist researchers in finding a generalist repository should no domain
repository be available to preserve their research data. Generalist repositories accept data regardless
of data type, format, content, or disciplinary focus. For this chart, we included a repository available to all
researchers specific to clinical trials (Vivli) to bring awareness to those in this field.
Desirable Characteristics of Data Repositories for Federall Funded Research
Shite House OSTP

FAIR

FAIR Guiding Principles

Findability
Accessibility
Interoperabiity
Reuse

FINDABLE - Data are easily findable by humans or computers using associated Metadata, including a unique persistent identifer (DOI).

ACCESSIBLE - Data are able to accessed that may require authentication or other authorization process.

INTEROPERABLE - Data are presented using formal, accessible, and broadly accepted language for analysis and processing.

REUSABLE - Data and metadata are sufficient so that they can be replicated.

FAIR Principles from GO FAIR (pdf)
In 2016, the ‘FAIR Guiding Principles for scientific data management and stewardship’1 were published in Scientific Data.

How to make your data FAIR
From OpenAIRE - Guide for Researchers
How FAIR are you data?
A Checklist produced for use at the EUDAT summer school to discuss how FAIR the participant's research data were and what measures could be taken to improve FAIRness.

Open Access

Open Access Publications

GOLD

Typically involves an Article Processing Charge (APC) payable to the publisher. Publications are then free to read and re-use.

GREEN

Authors can deposit an accepted manuscript at the time of submission into an institutional repository and/or subject or disciplinary repository with proper attribution.

LIMITED

Access is restricted in some way through publication agreement.

Choose an open source license
An open source license protects contributors and users. Businesses and savvy developers won’t touch a project without this protection.

Standards

Common Data Elements (CDEs)

CDEs are health data standard used in clinical and research settings.

CDEs are linked to controlled vocabluaties and terminologies such as SNOMED-CT and LOINC.

United States Core Data for Interoperability (USCDI)

The United States Core Data for Interoperability (USCDI) is a standardized set of health data classes and constituent data elements for nationwide, interoperable health information exchange. Review the USCDI Fact Sheet to learn more.

Data Curation Network Checklist for Data Curation