A Survey of Law and Policy Governing Immunization Information Systems

Daniel W. Martin, MSPHPublic Health Analyst

Presented to the Public Health Informatics ConferenceAtlanta, April 30, 2014

A Survey of Law and Policy A Survey of Law and Policy Governing Immunization Governing Immunization

Information SystemsInformation Systems

National Center for Immunization & Respiratory Diseases

Immunization Information Systems Support Branch

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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

improveGenerate 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

New York City Philadelphia San Antonio, TX Washington, DC

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Methods

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

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

Chicago

Houston

New York

Washington

San Antonio

Philadelphia

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

Mandate to report varies Consent requirements vary 46/53 obtain birth reports from Vital

Records or birthing hospital

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Chicago

Houston

New York

Washington

San Antonio

Philadelphia

Mandate

Mandate has no age restrictions

Childhood/adolescent/young adult

Young childhood

No Mandate

No IIS

IIS Reporting Mandate

Washington

Mandate

No Mandate

Mandate

2000

2012

•Mandates differ as to who must report

•Also differ as to whose data are reportable

•Enforcement variable

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IIS Consent Requirements (pediatric)

2000

2012

•Trend toward opt-out

•How opt-out or non-consent are handled is variable

•A few states more restrictive for adult records

Chicago

Houston

New York

Washington

San Antonio

Philadelphia

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 IISWashington

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)

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

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 …

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: Elaine Lowery, JD, MSPH * Bill Brand, MPH * Rebecca Gold, JD ** Gail Horlick, MSW, JD **

* Public Health Informatics Institute, Decatur, GA** CDC

Managers and staff of IIS and Immunization Programs

Data gathering and analysis were conducted by the Public Health Informatics Institute, Decatur, Georgia, under cooperative agreement no. HM08-080502CONT12 from the Centers for Disease Control and Prevention.

The findings and conclusions in this report are those of the authors and do notnecessarily 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/Immuniz

ation_Information_Systems___A_Decade_of.99861.aspx

Line-listed data is linked from this article

For more information please contact Centers for Disease Control and PreventionImmunization Information Systems Support Branch

Dan Martin, Public Health [email protected] (404) 639-0476

Gary Urquhart, Branch [email protected] (404) 639-8277

Thank you!

National Center for Immunization & Respiratory Diseases

Immunization Information Systems Support Branch