Health Information and Data Sharing

Data De-Identification and Toolkit

The De-identification Toolkit provides multiple tools and resources to address legal and practical considerations in using and sharing de-identified data and is intended for a broad audience of health officials, privacy officers, public health practitioners, data managers and their attorneys. Learn more.

HIPAA Privacy Status and Toolkit

The Hybrid Toolkit includes legal, policy and practical guidance to understand and implement HIPAA’s hybrid entity option. Learn more.

Federal Privacy Laws

The Federal Privacy Law resource compilation is intended to help state and local agencies access information and resources needed to better understand the federal legal protections and requirements associated with datasets collected by federal agencies or as part of a federally funded program.

Latest Resource for Health Information and Data Sharing

Data Privacy in School Nursing: Navigating the Complex Landscape of Data Privacy Laws (Part I)

School nurses can play a critical role in advancing child and adolescent health — including expanding access to care for many children. In providing care, school nurses collect and are responsible for a vast amount of personal information related to students and their health. This document is designed to help school nurses understand what information they can share, when, and with whom in accordance with federal privacy laws.

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From the Public Health Law Blog

Privacy Officers and Data Sharing: A Q&A with Network Attorney Sallie Milam

Building healthy communities requires access to relevant data from multiple sectors, including public health, health care, schools, human services, housing and law enforcement. Because they can be complex to navigate, federal and state laws governing data collection, use, and sharing can act as barriers to data use. With specialized knowledge in the use of data, privacy officers can help reduce this complexity, making data more accessible to the agencies they serve.

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Primary Legal Issues

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.

Technical Assistance Capacity

Experienced Network attorneys are ready and able to provide technical assistance and guidance on any legal or ethical issue that arises from the collection, use, storage and/or disclosure of data by public health agencies.

For legal technical assistance and support on accreditation of public health agencies, please contact your region. Your region will connect you with the appropriate expert based on your request.

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The Network for Public Health Law provides information and technical assistance on issues related to public health. The legal information and assistance provided does not constitute legal advice or legal representation. For legal advice, please consult specific legal counsel. For more information on the type of legal assistance the Network can provide, please see frequently asked questions.