Personally Identifiable Information in State Laws: Use, Release, and Collaboration at Health Departments

Despite benefits to sharing data among public health programs, confidentiality laws are often presumed to obstruct collaboration or data sharing. We present an overview of the use and release of confidential, personally identifiable information as consistent with public health interests and identify...

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Bibliographic Details
Published inAmerican journal of public health (1971) Vol. 107; no. 8; pp. 1272 - 1276
Main Authors Begley, Elin B, Ware, Jamie M, Hexem, Sarah A, Rapposelli, Karina, Thompson, Kelly, Penn, Matthew S, Aquino, Gustavo A
Format Journal Article
LanguageEnglish
Published United States American Public Health Association 01.08.2017
Subjects
Acquired immune deficiency syndrome
AIDS
AJPH Policy
Collaboration
Confidentiality
Confidentiality - legislation & jurisprudence
Consent
Consortia
Cooperative Behavior
Data retrieval
Departments
Disease control
Disease prevention
Economic conditions
Economic forecasts
Economic indicators
Epidemics
Health care policy
Health Insurance Portability & Accountability Act 1996-US
Health Law
Health Policy
Health surveillance
Hepatitis
HIV
Human immunodeficiency virus
Human Rights
Humans
Infections
Information Dissemination - legislation & jurisprudence
Information sharing
Other Infections
Patients
Personally Identifiable Information - legislation & jurisprudence
Policy Making
Prevention
Provisions
Public health
Public Health Administration - legislation & jurisprudence
Sexually transmitted diseases
State laws
Statistical data
STD
Tuberculosis
United States
Washington DC
United States > US
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Summary:Despite benefits to sharing data among public health programs, confidentiality laws are often presumed to obstruct collaboration or data sharing. We present an overview of the use and release of confidential, personally identifiable information as consistent with public health interests and identify opportunities to align data-sharing procedures with use and release provisions in state laws to improve program outcomes. In August 2013, Centers for Disease Control and Prevention staff and legal researchers from the National Nurse-Led Care Consortium conducted a review of state laws regulating state and local health departments in 50 states and the District of Columbia. Nearly all states and the District of Columbia employ provisions for the general use and release of personally identifiable information without patient consent; disease-specific use or release provisions vary by state. Absence of law regarding use and release provisions was noted. Health departments should assess existing state laws to determine whether the use or release of personally identifiable information is permitted. Absence of direction should not prevent data sharing but prompt an analysis of existing provisions in confidentiality laws.
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Peer Reviewed
CONTRIBUTORS
E. B. Begley developed the article design, led the writing and revision of the article, was responsible for the integrity of the article as a whole, and interpreted the findings. E. B. Begley, S. A. Hexem, and K. Thompson analyzed the findings. J. M. Ware led the analysis and the development of the research questions. J. M. Ware, S. A. Hexem, K. Thompson, and M. S. Penn interpreted the state laws. J. M. Ware and K. Thompson contributed significantly to writing and revising the article. S. A. Hexem developed the methods section. K. Rapposelli and G. A. Aquino revised the article. K. Rapposelli and G. A. Aquino interpreted the impact of state laws on state health department programs. K. Thompson was responsible for the integrity of the findings. M. S. Penn reviewed state laws and contributed significantly to the discussion section. M. S. Penn and G. A. Aquino developed the research questions. G. A. Aquino contributed to the article design.
Note. The findings and conclusions in this report do not necessarily represent the official position of the Centers for Disease Control and Prevention or the Agency for Toxic Substances and Disease Registry.
ISSN:0090-0036
1541-0048
DOI:10.2105/AJPH.2017.303862