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Making Syndromes Reportable Diseases ---
Authorizing, Mandating, or Both? A Perspective on the Legal Basis
for Syndromic Surveillance
Per H. Gesteland,1,2 R. Rolfs2,3,4
1Intermountain Health Care Institute for Health Care Delivery Research, Salt Lake City, Utah; 2University of Utah, Salt Lake City, Utah;
3Utah Department of Health, Salt Lake City, Utah;
4National Center for Chronic Disease Prevention and Health Promotion, CDC
Corresponding author: Per H. Gesteland, Division of Inpatient Medicine, Primary Children's Medical Center Department of Pediatrics, University of Utah School of Medicine, 100 North Medical Drive, Salt Lake City, Utah 84113. Telephone: 801-588-3813; Fax: 801-588-3814; E-mail:
per.gesteland@hsc.utah.edu.
Abstract
In preparation for the Salt Lake 2002 Olympic Winter Games, Utah established legal authority for
syndromic surveillance by enacting an administrative rule based on current communicable disease reporting authority. That
rule required designated emergency centers to report data on patients seen the previous day for whom
diagnostic information indicated the presence of
>1 of 11 tracked syndromes. Data could be reported by emergency centers
or collected by public health personnel.
Concurrently, the Detection of Public Health Emergencies Act was passed during Utah's 2002 legislative session.
That Act gave the Utah Department of Health (UDOH) authority to designate diseases, conditions, or syndromes
as "reportable emergency illness and health condition(s)" under subsequent administrative rule. UDOH is working to enact administrative rules that specify details of syndromic reporting based on that authority.
The Act authorizes voluntary reporting under normal circumstances and mandatory reporting upon declaration of
a public health emergency. That approach was chosen to avoid imposing an unacceptable burden on facilities that
lack technical infrastructure to report electronically. However, voluntary reporting poses the risk that providers will not participate for fear of being exposed to legal and public relations problems. Furthermore, the Health
Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule has led certain providers to require a specific legal mandate to report.
Other challenges under this approach are that current Utah law does not authorize collection of protected
health information for patients not determined to have one of the defined syndromes, data that are needed to
permit normalization for statistical analysis. Another concern is whether records should be processed to identify syndromes at the health-care facility, necessitating greater technical investment at each facility, or at the public health entity, requiring at least temporary disclosure to the public health entity of records not meeting the syndrome-reporting criteria.
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