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A Survey of Law and Policy Governing
Immunization Information Systems
Daniel W. Martin, MSPH
Public Health Analyst
Presented to the Public Health Informatics Conference
Atlanta, April 30, 2014
National Center for Immunization & Respiratory Diseases
Immunization Information Systems Support Branch
What are Immunization Information Systems?
Confidential public health systems that:

Collect & consolidate vaccine information from multiple providers &
provide records/decision support to providers
 So patients aren’t over- or under-immunized
 So all providers have a clear picture of a specific patient’s needs
 So providers know how well they’re serving their clientele, or where they need to
improve

Generate reminder/recall notifications
 So patients aren’t lost to follow-up
 So more people are fully vaccinated

Assess vaccination coverage
 To ensure the population is properly protected
 To identify pockets of need

Manage Vaccine Inventory
 Dose-level accounting and eligibility
 Vaccine ordering and reporting
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Study Objective
To obtain information relating to legislation, regulations,
rules, and policies (collectively referred to as “laws”) that
enable, support, or constrain the ability of an IIS to receive or
disclose immunization information for both children and
adults and to assess trends with regard to these laws.
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Participants
Immunization Programs in:
 49 states (no IIS in New Hampshire)
 4 municipalities
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
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New York City
Philadelphia
San Antonio, TX
Washington, DC
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Methods

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Westlaw search of state statutes
Online survey
 Feb-March 2012

Follow-up telephone interviews
 Initial interviews March-Apr 2012
 Validation of reclassified responses Feb 2013
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Historic data for trend assessment: Horlick et al.,
conducted in 2000 *
* Horlick GA, Beeler SF, Linkins RW. A review of state legislation related to immunization registries. Am J Prev Med. 2001;20(3):208-213.
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Legal Basis for IIS Operation


Laws specifically authorizing an IIS
Laws addressing the sharing of immunization
information
 From one provider to another
 With or through public health
 Does not actually describe an IIS

Laws addressing sharing of health information
 Public health may be referenced, but not specifically
immunization-centric

General public health authority
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Legal Basis for IIS Operation, 2012
New York
Chicago
Philadelphia
Washington
Houston
San Antonio
Authorization Type (children's data)
Law specifically authorizing IIS
Law addressing sharing of immunization information
Law addressing sharing of health information
Authorization derived from general public health authority
No IIS
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Whose Immunizations?

51/53 IIS are permitted to collect immunization data on
clients of all ages
 Connecticut & Rhode Island are only exceptions
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Mandate to report varies
Consent requirements vary
46/53 obtain birth reports from Vital Records or
birthing hospital
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IIS Reporting Mandate
• Mandates differ as to
who must report
• Also differ as to whose
data are reportable
• Enforcement variable
New York
Chicago
Philadelphia
Washington
Houston
2000
San Antonio
Mandate
Mandate has no age restrictions
Childhood/adolescent/young adult
Young childhood
No Mandate
Washington
No IIS
2012
Mandate
No Mandate
Mandate
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IIS Consent Requirements (pediatric)
• Trend toward opt-out
• How opt-out or nonconsent are handled is
variable
• A few states more
restrictive for adult
records
New York
Chicago
Philadelphia
Washington
Houston
2000
San Antonio
Consent to include children's data
Mandatory, with no right to opt out
Mandatory, with right to opt out
Implicit consent with Opt Out
Explicit consent
No IIS
Washington
2012
Consent
Implicit consent with no right to opt out
Implicit consent with opt out
Explicit consent
Consent not yet addressed
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Interaction with Health Information Exchanges
(HIEs)
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Nearly everyone (50/53) are considering exchanging
immunization data through an HIE
Only 36/53 currently have authority to do so
Consent laws may present barriers to exchange
 If HIE is considered a 3rd party
 If HIE and IIS consent differ (e.g. opt-in HIE and opt-out IIS)
 Between jurisdictions (states or cities) with different consent laws
More work is needed to examine policy implications of
data exchange between systems or jurisdictions
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Conclusions
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Increases in IIS authorization and reporting mandates
are positive trends
Shift from opt-in to opt-out may help with IIS
participation rates
Standardization of policies (where possible) should
facilitate information exchange
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Limitations …
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The data in this report were gathered in 2012. The legal
landscape is shifting rapidly and the data presented
here may not represent the most current state of IIS
policy.
All data are based upon self-reports by immunization
programs
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Acknowledgements/Disclaimer

Study co-authors:
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Elaine Lowery, JD, MSPH *
Bill Brand, MPH *
Rebecca Gold, JD **
Gail Horlick, MSW, JD **
* Public Health Informatics Institute, Decatur, GA
** CDC
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Managers and staff of IIS and Immunization Programs
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Data gathering and analysis were conducted by the Public Health Informatics
Institute, Decatur, Georgia, under cooperative agreement no. HM08080502CONT12 from the Centers for Disease Control and Prevention.
The findings and conclusions in this report are those of the authors and do not
necessarily represent the views of the Centers for Disease Control and Prevention.
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Peer-reviewed paper: Journal of Public Health
Management & Practice
 http://journals.lww.com/jphmp/Abstract/publishahead/Immunization_Inf
ormation_Systems___A_Decade_of.99861.aspx
 Line-listed data is linked from this article
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Thank you!
For more information please contact Centers for Disease Control and Prevention
Immunization Information Systems Support Branch
Dan Martin, Public Health Analyst
[email protected]
(404) 639-0476
Gary Urquhart, Branch Chief
[email protected]
(404) 639-8277
National Center for Immunization & Respiratory Diseases
Immunization Information Systems Support Branch