NIH Data Management and Sharing Policy

Understand which types of research projects are included in the NIH's Data Management and Sharing Policy and how the NIH deals with the sharing of confidential data.

Some scientific data produced with NIH funding could be considered proprietary. Check out this resource to learn more.

Details the HIPAA Privacy Rule, which outlines the circumstances under which covered entities may use or disclose protected health information for research.

The NIH Strategic Plan for Tribal Health Research (FY 2019–2023) aims to strengthen the NIH's partnerships with American Indian and Alaska Native communities through improved communication and collaboration, research capacity building, research advancement, improvement of cultural competency, and community engagement.

This page contains the virtual NIH Tribal Consultation schedules, which will occur during regional consultations with HHS. Additional supporting materials will be posted here as they become available.

Supplemental Information to the NIH Policy for Data Management and Sharing: Responsible Management and Sharing of American Indian/Alaska Native Participant Data

Request for Public Comments on DRAFT Supplemental Information to the NIH Policy for Data Management and Sharing

In consideration of the United Nations Declaration on the Rights of Indigenous Peoples, the CARE Foundations for Indigenous Data Governance were developed to promote the legal principles underlying collective and individual data rights.

The Native Health Database includes bibliographic details and summaries of publications, studies, surveys, and other reference materials on Native Americans, Alaska Natives, and Canadian First Nations' health and medical needs. The database offers data for organizations and persons interested in Native Americans' health-related concerns, initiatives, and programs to utilize, learn about, and benefit from.

The Native Health Database contains bibliographic information and abstracts of health-related articles, reports, surveys, and other resource documents pertaining to the health and health care of American Indians, Alaska Natives, and Canadian First Nations. The database provides information for the benefit, use, and education of organizations and individuals with an interest in health-related issues, programs, and initiatives regarding North American Indigenous peoples. The NIH is also focused on the responsible sharing of American Indian and Alaska Native data, as they implement changes in January 2023.

Handout for the Health Data from Tribal Nations: The Native Health Database and Changes to NIH Policy workshop (see above).

If you intend to submit an application for NIH funding this year, prioritize developing your Data Management & Sharing Plan (DMSP), especially if you intend to work with external collaborators.

Supplemental information outlining the elements that need to be addressed in a data management and sharing plan.

Get to know the FAIR guiding principles and consult them regularly.

The DMPTool is a free, online application that helps researchers create data management plans. It provides a click-through wizard for creating a DMP that complies with funder requirements. It also has direct links to funder websites, help text for answering questions, and resources for best practices surrounding data management.

You can now log into this resource via Single Sign On (SSO) with your OHSU network credentials to create projects, write plans, and get feedback from OHSU data librarians.

Using SSO to log into DMPTool

A collection of DMP templates based on funder policy requirements, with links to policies and some sample plans.

This catalog provides a central hub for showcasing and reviewing DMPs from different disciplines. It is intended to inspire researchers in the process of writing their own DMPs.

An article that details the steps to consider when creating a data management plan.

Understand NIH expectations around data sharing, as well as how to share scientific data while also protecting human subjects.

This page provides guidance and resources on NIH's sharing policies around NIH-Funded research.

Whether you are involved in an NIH-funded project and want to understand which sharing policies apply to your research and how to comply, or you are a researcher looking to access scientific data from NIH-affiliated repositories, this site is for you.

NIH policies expect the appropriate sharing of scientific data to be maximized, data from large scale genomic studies to be broadly and responsibly shared, research tools developed with NIH funding to be made accessible to other researchers, unique model organisms to be made available to the scientific community, clinical trials to be registered and summary results reported in ClinicalTrials.gov and peer reviewed manuscripts to be publicly available on PubMed Central.

This website, launched in April 2022, will help you navigate these policies, providing you with step-by-step guides, infographics, tools and resources to help you on your way. In the case of clinical trials and public access policies, the site provides a central access point and visibility to these policies, and links out to existing NIH sites for more information. A key goal of the site is to serve as a central portal, providing information on both NIH-wide and NIH Institute and Center-specific sharing policies and data repositories in a way that is easily sortable and searchable.

Guidance from the NIH on how to evaluate and select appropriate data repositories.

A global registry of research data repositories from a variety of academic disciplines.

Supplemental information for assisting researchers in choosing a suitable repository for preserving and sharing research data.

NIH encourages researchers to select the repository that is most appropriate for their data type and discipline. This page has a non-exhaustive list of NIH-supported repositories for sharing scientific data.

Although the NIH supports the use of domain-specific repositories whenever possible, it is acknowledged that these types of repositories are not available for all datasets. This link provides some recommendations but is not comprehensive.

This tool was created during the NIH Workshop on the Role of Generalist Repositories to Enhance Data Discoverability and Reuse. It is meant to help researchers decide which general repository to choose.

This article describes ten simple rules for digital data storage that grew out of a long discussion among instructors for the Software and Data Carpentry initiatives. Software and Data Carpentry instructors are scientists from diverse backgrounds who have encountered a variety of data storage challenges and are active in teaching other scientists best practices for scientific computing and data management. Thus, this paper represents a distillation of collective experience, and hopefully will be useful to scientists facing a variety of data storage challenges. It also provides a glossary of common vocabulary for readers who may not be familiar with particular terms.

An NIH webpage that highlights the costs associated with data sharing that might be included in funding requests.

The goal of this NASEM project is to create and demonstrate a framework for predicting long-term costs for maintaining, archiving, and accessing different forms of biomedical data as well as for calculating potential research rewards in the future.
Researchers can learn how to estimate expenses while making plans for data management and sharing by using slide decks, workbooks, user manuals, checklists, videos, archived webinars, and reports included in this collection.

Supplemental information outlining allowable NIH costs associated with data management and sharing

Addendum to the NIH Policy for Data Management and Sharing: Allowable Costs for Data Management and Sharing

NIH sharing policies resources and training opportunities. Includes, webinars, slide decks, etc. to help you better understand the upcoming changes.

OHSU Research Town Hall recording from October 10, 2022.

This section includes information about data services available from the Library, OCTRI, ACC, and ITG.

Explore any existing data services available to you.

The OHSU Library provides a variety of workshops. Check this link for upcoming sessions in areas that interest you.

Schedule a consultation to get personalized assistance from library experts. OHSU librarians and staff are available to address and support your information needs, including literature searching, citation management, data management, publishing, and historical research.