1. RTI International RTI International is a trade name of Research Triangle Institute. www.rti.org Barriers and Facilitators to Immunization Grantees’ Collection of Immunization and Exemption Data for Children Entering Kindergarten Review of Survey Results and Project Update Presented by: Christine M. Layton, MPH, PhD

2. RTI International 2

3. 3 Project Background  CDC contract Strengthening the Evidence Base: Monitoring Vaccination Coverage and Exemptions among Kindergarteners.  Ideally, the CDC wants grantees to use consistent methods to collect data that can be used to monitor adherence with the ACIP (Advisory Committee on Immunization Practice)-recommended vaccination schedule to permit state-to-state comparisons.  Overarching goals of project:  1. Determine what would be necessary for grantees to consistently collect and report immunization and exemption data for kindergarteners.  2. Develop tools (e.g., workshops) that grantees may use to collect data which are more easily comparable.

4. RTI International 4 Presentation Overview  Where we’ve been  Survey  Identifying best practices  Where we’re headed  Refining best practices  Developing tools to apply best practices

5. RTI International 5 Survey Background  Primary goal of survey: Identify barriers and facilitators to grantees’ efforts to collect and report data to monitor immunization and exemptions among kindergarteners  Survey Structure: 56 closed- and open-ended questions answered via 1 hour telephone interview  Timing of survey: Conducted all interviews between July 22 and September 16, 2010  Survey participants:  All 50 state grantees – 100% participation!  4 urban-area grantees: Washington, DC; New York City, NY; Houston, TX; and San Antonio, TX (remaining urban grantees did not collect/report school immunization data)

6. RTI International 6 Survey Topics  Process for Collecting and Documenting Immunization Data  Barriers and Facilitators to Collecting Immunization and Exemption Data for Children Entering Kindergarten  State-to-State Comparisons  Validity  Tracking Homeschooled Children  Exemptions  Kindergarten Entry Requirements  Data Use  Implementation and Enforcement  Technical Assistance Needs

7. RTI International 7 Importance of Kindergarten Immunization Data to Grantees

8. RTI International 8 Programmatic Uses for Kindergarten Assessment Data Some grantees reported using this data to:  Facilitate the identification of schools, providers, and communities that would benefit from education  Educate school staff, providers, and immunization partners (e.g., local health departments, WIC programs)  Identify schools that are not complying with requirements and may warrant further examination or intervention  Locate pockets of need (i.e., areas where vaccination rates are low and/or exemption rates are high)  Support advocacy efforts on immunization-related issues (e.g., informing decision-making on relevant fiscal issues, raising awareness about the need for prioritizing the issue of improving immunization coverage)  Assess trends in exemption rates and identify communities in which anti- vaccine sentiments are common or growing  Make decisions about the distribution of program time and resources

9. RTI International 9 Primary Purpose for Collecting This Data

10. RTI International 10 Schematic of Data Flow

11. RTI International 11 Barriers to Using Immunization Information Systems * A total of 46 grantees responded to this question. 8 of the grantees reporting one of the barriers listed above also described “Other” major barriers they’ve encountered.

12. RTI International 12 Other Barriers to Using Immunization Information Systems  Other commonly reported barriers to using registries or immunizations information systems: o FERPA has been interpreted in some states so that immunization data in the educational record cannot be shared outside the educational system, e.g., to an IIS. o Schools may have limited (read-only) to IIS. o Technical issues with data exchange between providers’ electronic medical record systems and/or school immunization tracking systems and the registry/IIS. o Absence of exemption information in registry/IIS

13. RTI International 13 Main Difficulties

14. RTI International 14 What Grantees Want CDC to Know  Grantees also provided recommendations for the CDC, including:  Share Expertise  Tools  Training  Exert National Influence  FERPA  Recognize Grantees’ Variability  Grantees’ authority to implement policies, rules, and regulations varies considerably state by state.  There’s no “one-size fits all”, “cookie-cutter” approach to collecting and reporting immunization and exemption data which will work for all grantees.  Work with grantees, e.g., collaborate with grantees to define reporting requirements.

15. RTI International 15 Best Practices  Working definition: promising approaches to collecting data which are:  Valid;  Comparable, and possibly;  Aspirational  Identified through a collaborative process including input from:  CDC  RTI  Others (including academic researchers and input from AIM)

16. RTI International 16 Where Data Goes For each step in the process, we propose a best practice.

17. RTI International 17 Best Practice Categories  Documentation of Immunizations  Documentation of Exemptions  Data Collection at Schools  Transfer of Immunization and Exemption Data  Validating Data  Reporting Data  Grantee Communication with Schools  Programmatic Uses of Data

18. RTI International 18 Example of Possible Best Practices for School Data Collection  Data collection performed by school nurses, local health department staff  Schools’ “read-access” to immunization registries  Notification of grantee when large number of children are non-compliant with immunization requirements  Completion of assessment by December 31 st

19. RTI International 19 Next Steps  Refine best practices  Develop tools to facilitate adoption of best practices  Share tools with grantees

20. RTI International 20 Acknowledgements  ARRA (American Recovery and Reinvestment Act) funding via CDC contract GS10F0097L (NCIRD/ISD).  (Non-financial) support was provided by Claire Hannan, Katelyn Wells of AIM (Association of Immunization Managers) and its Research Committee.  Enormous thanks to:  Jacqueline Amoozegar and Patrick Nerz for conducting most of the interviews and contributing to data entry and analysis.  The immunization program managers and their staff who responded to the survey.