Data Sharing

Data sharing is the act of making data available to people, organizations, stakeholders, and/or other partners. Data sharing is an established best-practice that is in line with the Open Data movement, which aims to make public data free and available to the public. Sharing data among stakeholders, organizations, and community members enables better understanding of complex issues and can inform collaborative decision-making. In the context of community health, data sharing can lead to better health outcomes by identifying areas of need, developing targeted interventions, and monitoring progress over time. Data sharing promotes collaboration, transparency, and accountability that help us work better together and build trust needed for long-term, sustainable change.


The HIV/AIDS epidemic in the 1980s and 90s set the stage for increased collaboration and data sharing among researchers and healthcare providers, as well as greater awareness of the importance of data sharing for public health. The epidemic led to the establishment of research networks, electronic medical records, national surveillance systems, and data sharing policies to improve collaboration and data sharing among researchers and healthcare providers. These innovations and technological developments have had a lasting impact on the field of HIV/AIDS research and healthcare and have led to a proliferation of online communities and collaborative platforms, as well as web-based tools for data analysis and visualization. The proliferation of online communities and data infrastructure has, in turn, prompted demands for open data and software to promote transparency in research and data use.


Data sharing increases the information available to patients, researchers, policymakers, and communities about community conditions and community health. Ensuring equity in data sharing requires a thoughtful, deliberate approach that prioritizes privacy and security, inclusive data practices, access to data, transparency and accountability, and benefits to marginalized communities.  Factors affecting data sharing today include technical infrastructure, legal and regulatory frameworks, cultural and social norms, economic factors, and political factors. Specific factors include:

  • Technical infrastructure: The ability to share data is dependent on technical infrastructure, such as reliable networks and storage systems, data formats, and data management software. In some cases, technical limitations may make it difficult or impossible to share data. 

  • Legal and regulatory frameworks: Data protection laws may limit the types of data that can be shared, or require that certain safeguards be put in place to protect individuals' privacy. Intellectual property laws may also impact data sharing, as researchers may be reluctant to share data that could potentially be used by others to develop new products or services without compensation. 

  • Cultural and social norms: Some communities may place a high value on privacy and be reluctant to share personal data, while others may be more willing to share data for the common good. 

  • Economic factors: Researchers may be reluctant to share data if they believe that doing so could undermine their ability to secure funding or publish papers. In some cases, data may be considered a valuable commodity, and researchers or institutions may seek to monetize it. 

  • Political factors: Government policies may encourage or discourage data sharing, depending on the perceived benefits and risks.


Through data sharing, we can cultivate a culture of shared stewardship and community ownership of data. With respect to its role in coalescing and growing collaborations and partnerships and promoting transparency, accountability, and democracy, data sharing is a multi-solving strategy for improving belonging and civic muscle, and other vital community conditions. Data sharing gives us the information we need to power movements that transform our systems for health and well-being.


By working together, we can promote more effective and equitable systems that better serve individuals and communities. Local communities and changemakers can advocate for data sharing and encourage data sharing by providing funding, resources, and support for data-sharing efforts. Additionally, they can promote data literacy by providing training and resources that help people understand how to access and use data in ways that are meaningful and relevant to their lives.


Resources & Tools


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Health Data Resources
Resource - Data Bank/repository
Brought to you by NIH
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Principles for Using Public Health Data To Drive Equity
Resource - Report
Brought to you by CDC Foundation
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Resources for Social Determinants of Health Indicators
Resource - Guide/handbook
Brought to you by NACCHO
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Social Determinants of Health Information Exchange Toolkit
Resource
Brought to you by U.S. Department of Health and Human Services
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The Community Schools Initiative
Resource - Fact Sheet
Brought to you by American Institutes for Research in the Behavioral Sciences
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Connect SoCal (SB 375)
Resource - Fact Sheet
Brought to you by American Institutes for Research in the Behavioral Sciences
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NCAI Policy Research Center: Data Disaggregation
Resource - Website/webpage
Brought to you by National Congress of American Indians
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Do No Harm Guide: Additional Perspectives on Data Equity
Resource - Report
Brought to you by Urban Institute
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Data Sharing Helps Reduce the Number of Homeless Veterans
Resource
Brought to you by The Pew Charitable Trusts
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Introduction to Data Sharing
Resource - Website/webpage
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Disaggregating American Indian and Alaska Native Data: A Review of Literature
Resource - Report
Brought to you by National Congress of American Indians
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Addressing Data and Information Gaps Contributing to Opioid Use Disorder
Resource - Policy Brief
Brought to you by Network for Excellence in Health Innovation
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Toolkit for Communities Using Health Data
Resource - Guide/handbook
Brought to you by NCVHS
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SA2020
Resource - Fact Sheet
Brought to you by RWJF
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Confidentiality Toolkit
Resource - Guide/handbook
Brought to you by Administration for Children and Families
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Los Angeles Homeless Initiative
Resource - Fact Sheet
Brought to you by American Institutes for Research in the Behavioral Sciences
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Cincinnati All Children Thrive Learning Network
Resource - Fact Sheet
Brought to you by American Institutes for Research in the Behavioral Sciences
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Data Modernization Initiative Strategic Implementation Plan
Resource - Plan
Brought to you by CDC
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Data Visualization Basics
Resource - Website/webpage
Brought to you by PolicyLink
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Project REFOCUS
Resource - Website/webpage
Brought to you by University of California Los Angeles
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Federal Evidence Agenda on LGBTQI+ Equity
Resource - Report
Brought to you by National Science and Technology Council
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The Data Equity Framework
Resource
Brought to you by We All Count
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Improving Health through Community Partnerships
Story - Written
Brought to you by 100MHL
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Exploratory Measures for Belonging and Civic Muscle
Story - Original
Brought to you by Community Commons
Published on 07/28/2021
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Oral Health Data Tools
Tool - Data Bank/repository