Health Information and Data Sharing

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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.