1. Daniel W. Martin, MSPH Public Health Analyst Presented to the Public Health Informatics Conference Atlanta, April 30, 2014 A Survey of Law and Policy Governing Immunization Information Systems National Center for Immunization & Respiratory Diseases Immunization Information Systems Support Branch

2. 2 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

3. 3 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.

4. 4 Participants Immunization Programs in:  49 states (no IIS in New Hampshire)  4 municipalities  New York City  Philadelphia  San Antonio, TX  Washington, DC

5. 5 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.

6. 6 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

7. 7 Legal Basis for IIS Operation, 2012

8. 8 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

9. 9 IIS Reporting Mandate 2000 2012 Mandates differ as to who must report Also differ as to whose data are reportable Enforcement variable

10. 10 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

11. 11 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 3 rd 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

12. 12 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

13. 13 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

14. 14 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 not necessarily represent the views of the Centers for Disease Control and Prevention.

15. 15  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 http://journals.lww.com/jphmp/Abstract/publishahead/Immunization_Inf ormation_Systems___A_Decade_of.99861.aspx  Line-listed data is linked from this article

16. For more information please contact Centers for Disease Control and Prevention Immunization Information Systems Support Branch Dan Martin, Public Health Analyst dwm5@cdc.govdwm5@cdc.gov(404) 639-0476 Gary Urquhart, Branch Chief gau5@cdc.govgau5@cdc.gov(404) 639-8277 Thank you! National Center for Immunization & Respiratory Diseases Immunization Information Systems Support Branch