Health Information and Data Sharing
The ability to share and analyze health and other data can be powerful in identifying problems and solutions to improve the health of communities. Our collection of tools and resources are designed to help address legal barriers and facilitate data sharing while ensuring health agencies and organizations operate within the legal requirements of HIPAA and other laws and regulations.
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Collecting and Disseminating Public Health Data Disaggregated by Race and Ethnicity to Advance Health Equity: Navigating the Legal Issues
Disaggregation of Public Health Data by Race & Ethnicity: A Legal Handbook
Reproductive Health and Data in a Post-Roe World
“I Want to Say ‘Yes,’ But…”— A Webinar for Lawyers Advising Data-Sharing Efforts
Getting from the Data Sharing Land of No onto Pathways to Yes: Navigating Data Sharing Projects for Non-Attorneys
Pathways to Yes: A legal framework for achieving data sharing for health, well-being, and equity
Modernizing Consent: Creating a Replicable Model to Advance Health and Equity
IZ Gateway Agreement for Data Exchange Between IIS and Multi-Jurisdictional Vaccine Providers
Immunization (IZ) Gateway Project Legal Agreements: Facilitating Secure Data Sharing for IISs
D.C.: Laws Regarding Minor Consent to Health Care
Maryland: Laws Regarding Minor Consent to Health Care
Balancing Client Privacy with First Amendment Rights in Local Health Department Clinics
Data Governance Strategies for States and Tribal Nations
IZ Gateway Project Legal Agreements: Facilitating Secure Data Sharing for Jurisdictions’ Immunization Information Systems
FAQ: COVID-19 and Health Data Privacy
Michigan Laws Related to Right of a Minor to Obtain Health Care without Consent or Knowledge of Parents
Resources for Health Departments’ Data Sharing During the COVID-19 Pandemic
Data Sharing Guidance for School Nurses
Data Privacy in School Nursing: Navigating the Complex Landscape of Data Privacy Laws (Part II)
Data Governance: Ensuring Trust and Managing Risks
Summary of State Laws that Facilitate Data Sharing Among State Agencies
Checklist of Information Needed to Address Proposed Data Collection, Access and Sharing
Linking and De-identifying State-level Data Sets to Tackle the Opioid Epidemic
Data Privacy in School Nursing: Navigating the Complex Landscape of Data Privacy Laws (Part I)
Exchange of Blood Lead Data to Facilitate Responsive Action Under the Lead Safe Housing Rule
Undocumented Immigrants and Patient Privacy Laws
Data Sharing Strategies to Advance Health Equity
Immigrant Health: The Role and Impact of Medicaid, HIPAA, and the Public Charge Doctrine
Tackling Tough Public Health Problems through Cross-Sector Data Collaborations
Improving Health Equity Requires Addressing Multiple Race and Ethnicity Data Collection Barriers
Managing Privacy Risks to Advance Health Equity through Dissemination of Disaggregated Data
Curtailing Implicit Racial Biases in Electronic Health Records
A Closer Look at Health Information and Data Sharing
Data are the lifeblood of public health practice and research. Data are essential for surveillance, epidemiological investigation, research, program development, implementation and evaluation. Public health agencies collect, analyze and store identifiable information from a disparate collection of sources and use data in diverse ways.
Databases and registries include identifiable information about individuals with specific diseases, illnesses and injuries. Historically, public health data has been stored separately depending on where it came from or what it was used for. However, technological advances have increased linkages between data repositories and therefore expanded the potential uses and value of data for public health practice and research. But increased data sharing also brings an increased need for public health agencies to protect the integrity and sensitivity of this information.
Emerging health information exchanges have the potential to greatly increase the appropriate flow of data between many health-related entities, including patient treatment information exchanged between health care providers. In addition to potentially reducing costs, health information exchanges have the potential for many other benefits to patients, health care workers and public health officials, including:
- Earlier detection of infectious disease outbreaks
- Improved tracking of patients’ chronic disease management
- Improved coordination of care across public and private providers
- Reduction of adverse health care events and
- More accurate assessments of the amount of disease in the community and of the impact of community-wide prevention initiatives
Like other new technologies, however, health information exchanges raise corresponding legal and policy issues.
Many existing laws pertain to the use, storage and disclosure of data. Public health practitioners need to understand how these laws apply to multiple issues, such as how to address the fact that many health care providers, schools and others are reluctant to share data. Public health practitioners also need to understand privacy and security laws. For example, public health practitioners engaged in research must understand and heed the federal Common Rule and comparable state provisions, which protect individuals whose data are used in research. Public health practitioners also need to consider ethical issues, such as weighing an individual’s confidentiality with a disease threat to the community.
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