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
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Interactive Summary Health Statistics for Children
Resource - Data Bank/repository
Brought to you by CDC National Center for Health Statistics
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Detroit Health Equity Dashboard
Resource - Data Bank/repository
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Health-Related Surveys for Epidemiologists
Resource - Data Bank/repository
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Sage Data - Data Basics
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Interactive Summary Health Statistics for Adults
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Principles for Using Public Health Data To Drive Equity
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Resources for Social Determinants of Health Indicators
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Social Determinants of Health Information Exchange Toolkit
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The Community Schools Initiative
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Connect SoCal (SB 375)
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NCAI Policy Research Center: Data Disaggregation
Resource - Website/webpage
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How Community-Based Organizations Use Data to Advance Racial Equity
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What is a Survey
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Data Democratization: The Unsung Hero of Health Equity
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Toolkit for Conducting Focus Groups
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Do No Harm Guide: Crafting Equitable Data Narratives
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Local Data for Equitable Communities
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Interactive Summary Health Statistics for Adults, by Detailed Race and Ethnicity
Resource - Data Bank/repository
Brought to you by CDC National Center for Health Statistics
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Do No Harm Guide: Additional Perspectives on Data Equity
Resource - Report
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"Data Walk" Is a Key Tool in Results-Based Leadership
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Using the Methods of the Public Health Disparities Geocoding Project to Monitor COVID-19 Inequities and Guide Action for Health Justice
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Data Sharing Helps Reduce the Number of Homeless Veterans
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Brought to you by The Pew Charitable Trusts
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Conducting Successful Virtual Focus Groups
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Introduction to Data Sharing
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Health Data Governance Principles
Resource
Brought to you by Transform Health
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Data Walk - Population Health Innovation Lab
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Brought to you by Population Health Innovation Lab
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Toolkit for Communities Using Health Data
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SA2020
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Confidentiality Toolkit
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Tool: Hosting a Data Walk
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Brought to you by Tamarack Institute
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Los Angeles Homeless Initiative
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Brought to you by American Institutes for Research in the Behavioral Sciences
First page of A Guide to Conducting Online Focus Groups guide
A Guide to Conducting Online Focus Groups
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Brought to you by Vital Strategies
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A Community-Centered Approach to Data Sharing and Policy Change: Lessons for Advancing Health Equity
Resource - Policy Brief
Brought to you by Center for Health Care Strategies
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Cincinnati All Children Thrive Learning Network
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Brought to you by American Institutes for Research in the Behavioral Sciences
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Data Modernization Initiative Strategic Implementation Plan
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Brought to you by CDC
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Data Visualization Basics
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Project REFOCUS
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Conducting Surveys
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Focus Group Tip Sheet
Resource - Fact Sheet
Brought to you by U.S. Department of Health and Human Services
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The Future for Community Use of Data to Advance Equity
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Guidelines for Conducting a Focus Group
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Cover page of Federal Evidence Agenda on LGBTQI+ Equity
Federal Evidence Agenda on LGBTQI+ Equity
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Brought to you by National Science and Technology Council
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Introduction to Conducting Focus Groups
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Native Data Sovereignty Can Address Data Gaps and Improve Equity
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Understanding and Using American Community Survey Data: What All Data Users Need to Know
Resource - Guide/handbook
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Do No Harm Guide: Applying Equity Awareness in Data Visualization
Resource - Guide/handbook
Brought to you by Urban Institute
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Survey Explorer
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Data Chats as an Organizing and Capacity-Building Process
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Using Social Math To Support Your Policy Issue
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The Data Equity Framework
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Our Favorite Data Sources
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Staff Pick!
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Our Favorite State Data Tools
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Refreshing Data Basics
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Improving Health through Community Partnerships
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Exploratory Measures for Belonging and Civic Muscle
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Disaggregating Population Health Measures
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Published on 10/19/2023
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Using Benchmarks to Explore Population Health Data
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Published on 08/23/2022
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Understanding and Interpreting Population Health Measures
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Published on 11/15/2022
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Foundations for Community Health Data Users
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Published on 04/17/2024
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Tracking Trends in Population Health Over Time
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Published on 12/13/2022
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Our Favorite Data Sources Part II
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Published on 07/09/2024
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Data Commons
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Healthy Kids Colorado Survey Dashboard
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Finding and Using Health Statistics
Tool - Workshop/training
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Population Health Information Tool
Tool - Data/mapping Tool
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Pennsylvania Cancer Statistics Dashboard
Tool - Data/mapping Tool

 Related Topics


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Data Equity

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Geospatial Data

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Monitoring and Surveillance

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Administrative Data

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Data Accessibility

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Demographic Data

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Data Sharing

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Community Health Needs Assessment