Developed by Seabourne Consulting, experts in Data Sharing

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


Screen capture of Health Data Resources webpage
Health Data Resources
Resource - Data Bank/repository
Brought to you by NIH
Screen capture of 'Interactive Summary Health Statistics for Children' webpage
Interactive Summary Health Statistics for Children
Resource - Data Bank/repository
Brought to you by CDC National Center for Health Statistics
Screen capture of Health-Related Surveys for Epidemiologists webpage
Health-Related Surveys for Epidemiologists
Resource - Data Bank/repository
Screen capture of 'Interactive Summary Health Statistics for Adults' webpage
Interactive Summary Health Statistics for Adults
Resource - Data Bank/repository
Brought to you by CDC National Center for Health Statistics
Cover page of Principles for Using Public Health Data to Drive Equity
Principles for Using Public Health Data To Drive Equity
Resource - Report
Brought to you by CDC Foundation
Resources for Social Determinants of Health Indicators
Resource - Guide/handbook
Brought to you by NACCHO
Screen capture of Improving Data Fluency webpage
Improving Data Fluency
Resource - Guide/handbook
Brought to you by CHR&R
Cover page of Social Determinants of Health Information Exchange Toolkit
Social Determinants of Health Information Exchange Toolkit
Resource
Brought to you by U.S. Department of Health and Human Services
The Community Schools Initiative
Resource - Fact Sheet
Brought to you by American Institutes for Research in the Behavioral Sciences
screenshot of the front page of the report
Connect SoCal (SB 375)
Resource - Fact Sheet
Brought to you by American Institutes for Research in the Behavioral Sciences
Screen capture of NCAI Policy Research Center: Data Disaggregation
NCAI Policy Research Center: Data Disaggregation
Resource - Website/webpage
Brought to you by National Congress of American Indians
Screen capture of How Community-Based Organizations Use Data to Advance Racial Equity blog post
How Community-Based Organizations Use Data to Advance Racial Equity
Resource - Blog
Brought to you by Urban Institute
First page of What is a Survey booklet
What is a Survey
Resource - Book
Screen capture of Data Democratization: The Unsung Hero of Health Equity blog
Data Democratization: The Unsung Hero of Health Equity
Resource - Blog
Brought to you by Health Leads
Cover page of Toolkit for Conducting Focus Groups document
Toolkit for Conducting Focus Groups
Resource - Guide/handbook
Screen capture of Interactive Summary Health Statistics for Adults, by Detailed Race and Ethnicity webpage
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
Cover page of Do No Harm Guide: Additional Perspectives on Data Equity
Do No Harm Guide: Additional Perspectives on Data Equity
Resource - Report
Brought to you by Urban Institute
Data Sharing Helps Reduce the Number of Homeless Veterans
Resource
Brought to you by The Pew Charitable Trusts
Screen capture of Conducting Successful Virtual Focus Groups webpage
Conducting Successful Virtual Focus Groups
Resource
Brought to you by Child Trends
A snap shot of Introduction to Data Sharing webpage
Introduction to Data Sharing
Resource - Website/webpage
Cover page of Health Data Governance Principles
Health Data Governance Principles
Resource
Brought to you by Transform Health
Title page of Disaggregating American Indian and Alaska Native Data: A Review of Literature
Disaggregating American Indian and Alaska Native Data: A Review of Literature
Resource - Report
Brought to you by National Congress of American Indians
Addressing-Data-Gaps-Opioid
Addressing Data and Information Gaps Contributing to Opioid Use Disorder
Resource - Policy Brief
Brought to you by Network for Excellence in Health Innovation
Cover page for Toolkit for Communities Using Health Data
Toolkit for Communities Using Health Data
Resource - Guide/handbook
Brought to you by NCVHS
screenshot of the front page of the report
SA2020
Resource - Fact Sheet
Brought to you by RWJF
Cover page for Confidentiality Toolkit
Confidentiality Toolkit
Resource - Guide/handbook
Brought to you by Administration for Children and Families
screenshot of the front page of the report
Los Angeles Homeless Initiative
Resource - Fact Sheet
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
Resource - Guide/handbook
Brought to you by Vital Strategies
screenshot of the front page of the report
Cincinnati All Children Thrive Learning Network
Resource - Fact Sheet
Brought to you by American Institutes for Research in the Behavioral Sciences
First page of Data Modernization Initiative Strategic Implementation Plan
Data Modernization Initiative Strategic Implementation Plan
Resource - Plan
Brought to you by CDC
Screen capture of Data Visualization Basics
Data Visualization Basics
Resource - Website/webpage
Brought to you by PolicyLink
Screen capture of Project REFOCUS
Project REFOCUS
Resource - Website/webpage
Brought to you by University of California Los Angeles
Screen capture of Conducting Surveys webpage
Conducting Surveys
Resource - Website/webpage
First page of Focus Group Tip Sheet document
Focus Group Tip Sheet
Resource - Fact Sheet
Brought to you by U.S. Department of Health and Human Services
Screen capture of The Future for Community Use of Data to Advance Equity
The Future for Community Use of Data to Advance Equity
Resource - Webinar
Brought to you by Urban Institute
First page of Guidelines for Conducting a Focus Group document
Guidelines for Conducting a Focus Group
Resource - Guide/handbook
Cover page of Federal Evidence Agenda on LGBTQI+ Equity
Federal Evidence Agenda on LGBTQI+ Equity
Resource - Report
Brought to you by National Science and Technology Council
Cover page of Introduction to Conducting Focus Groups document
Introduction to Conducting Focus Groups
Resource - Guide/handbook
Screen capture of Native Data Sovereignty Can Address Data Gaps and Improve Equity blog post
Native Data Sovereignty Can Address Data Gaps and Improve Equity
Resource - Blog
Brought to you by Urban Institute
Published on 06/13/2022
Cover page of Understanding and Using American Community Survey Data: What All Data Users Need to Know
Understanding and Using American Community Survey Data: What All Data Users Need to Know
Resource - Guide/handbook
Brought to you by Census Bureau
Cover page of Do No Harm Guide: Applying Equity Awareness in Data Visualization
Do No Harm Guide: Applying Equity Awareness in Data Visualization
Resource - Guide/handbook
Brought to you by Urban Institute
Screen capture of Survey Explorer webpage
Survey Explorer
Resource - Data Bank/repository
Screen capture of the Data Equity Framework webpage
The Data Equity Framework
Resource
Brought to you by We All Count
Collage of images related to data. Banners read
Refreshing Data Basics
Story
Brought to you by IP3
Published on 05/30/2023
Woman buckling infant into infant car seat
Improving Health through Community Partnerships
Story - Written
Brought to you by 100MHL
Photo of city with the words,
Exploratory Measures for Belonging and Civic Muscle
Story - Original
Brought to you by Community Commons
Published on 07/28/2021
Photo of three plants growing in pots.
Using Benchmarks to Explore Population Health Data
Story
Brought to you by IP3
Published on 08/23/2022
Screen capture of Finding and Using Health Statistics webpage
Finding and Using Health Statistics
Tool - Workshop/training

 Related Topics


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Data Equity

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Demographic Data

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Data Sharing

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Surveys

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Community Needs Assessment

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Focus Groups

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Community Health Needs Assessment