October 28, 2002 Philadelphia, Pennsylvania

1. October 28, 2002 Philadelphia, Pennsylvania

2. Growing, Connecting, and Protecting through Immunization Registries Walter A. Orenstein, M.D. Director National Immunization Program Centers for Disease Control and Prevention

3. Increase to 95% the proportion of children aged 5 years old and younger who participate in fully operational immunization registries. Healthy People 2010 Objective for Registries Our Expectations are High

4. Meeting the Expectation • Progress to date • Important elements for building registry success • Benefits and contributions of immunization registries • The future

5. Children < 6 years with 2+ Immunizations, 2001 Overall = 44% Source: National Immunization Program Annual Report, 2001

6. Important Elements for Building Registry Success • Provider participation • Data quality • Data use • Parent/guardian participation • Privacy and confidentiality • Adequate resources and funding

7. Data Quality • High quality data are critical for fostering provider participation • Providers need to know registry participation rates • Registries need to have complete and accurate records • There needs to be only one record for each child • CDC’s de-duplication toolkit www.cdc.gov/nip/registry/dedup/dedup.htm

8. Improving Data Quality • Use NIS to assess registry data quality and participation rates NIP to Pilot test in 6 IAPs: • Arizona (Maricopa County and rest of Arizona) • Michigan (Detroit and rest of Michigan) • Oklahoma • Washington, D.C.

9. Data Use • Develop and implement systems that provide needed and useful data • Provides quick access to complete immunization histories • Enables providers to identify the immunization needs of individual children

10. Data Use • Identify and document evidence that highlights the value and benefits of registry participation, for example • Economic benefits • Ease of use • Publish in lay and peer review press • Educate providers that the “success stories” are the rule– not the exception

11. The Benefits and Contributions of Immunization Registries

12. Tangible Benefits of Registry Data • Registries can help quickly identify how immunization recommendations are being implemented. • Registries can quickly identify impact of vaccine delays and shortages.

13. Use of an Immunization Registry to Track Hepatitis B Immunization Hep B given 0-56 days after birth Thimerosal 700 and Hep B Hep B given 0-5 days after birth 600 500 T-free widely 400 available—VFC Number of Children 300 T-free available in Hospitals 200 100 0 02 05 08 11 14 17 20 23 28 29 32 35 38 41 44 47 50 01 04 07 10 13 16 19 22 25 28 31 1999 2000 Week Source: Immunization ALERT (Oct 2000) Note: Vital Records reported hospital Hep B1 to ALERT since Nov 1999

15. Tangible Benefits continued. . . • Registries greatly foster the identification and notification of children with deferred vaccinations (e.g., due to a vaccine shortage). • 48 (75%) of 64 grantees have reminder/recall ability • 23 (48%) of 48 grantees made a “special effort” to contact the parents of deferred children • Registries are an effective way to identify children who do not meet school vaccination requirements. • Example: Washington, D.C., registry identified about • 20,000 children in need of vaccination(s).

16. Encourage Parent Participation • Reach parents through providers • Emphasize the tangible, personally relevant benefits of registries – not operational features and technical capabilities • Build credibility by providing a solid foundation of privacy and confidentiality

17. Privacy and Confidentiality • Encourage adoption of minimum specifications and guidelines for protecting privacy of registry users and the confidentiality of registry data • Develop criteria for evaluating content and implementation of confidentiality policies

18. Registry Financing • Immunization registries must have adequate and sustainable financing • Immunization registries cannot rely totally on federal support • You should seek and use a range of sources, such as Medicaid, private-sector partnerships, and state or local funding

19. Plan for the future. . .

20. Increase Registry Relevance • Programmatic Registry Operations Workgroup Designed to provide programmatic standards of excellence, including ways to • Support VFC programs • Increase vaccine safety • Implement disease surveillance and prevention strategies

21. Registry Certification • Certification status can facilitate marketing and fund raising efforts (e.g., it provides reassurance regarding the quality and operation of the registry). • Private providers and other registries should be more likely to share data when certified registries meet high standards • NVAC recommends registries be certified. • Certification is supported by the registry stakeholder community as a way of ensuring minimum functional standards.

22. Registry Certification, cont. • All stakeholders feel that certification should be voluntary. • Registry certification awaits • Evaluate certification pilots • Finalize certification protocol • Identify certification contractor

23. Planning Strategically • Finalizing a 3-5 year strategic plan that will address • Privacy & confidentiality • Technical capabilities • Integration • NIP staffing • Funding • Partnerships • Provider participation • Education • Data quality • Data use Performance measures = accountability

24. Some Key Partners • Stakeholder organizations – a few examples • All Kids Count • American Immunization Registry Association • Association of Immunization Managers • Committee on Immunization Registry Standards and Electronic Transactions • Every Child by Two • Health care professional organizations • Public health organizations • Government public health and financing organizations

25. Consider Expanding Your Scope and Skills to Bio-Terrorism • Identify ways that registries can assist state and local bioterrorism preparedness and readiness activities • Many states are already considering BT uses and applications1 • Planning: 14 (33%) of 42 responding states • Applied for BT funds: 5 (36%) of 14 • Received BT funds: 2 (40%) of 5 1October 2002

26. Reflecting on our efforts to date, To paraphrase Ralph Waldo Emerson: “That which we persist in doing becomes easier– not that the nature of the task has changed, but [y]our ability to do has increased.”

27. Your Efforts Have. . . • Helped introduce and apply information technology to immunization programs • Increased our ability to use information technology • Improved our ability to implement immunization recommendations– and as such, improved the health of our children

28. Susie Childrey Sharon Gentry Jameka Gilmore Rich Greenaway Andrew James Suzanne Johnson-DeLeon Greg Lanman Angela Salazar-Martini Special Thank You Thanks to everyone who helped plan and stage this conference

29. Enjoy the Conference!