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October 28, 2002 Philadelphia, Pennsylvania. Growing, Connecting, and Protecting through Immunization Registries . Walter A. Orenstein, M.D. Director National Immunization Program Centers for Disease Control and Prevention.
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October 28, 2002 Philadelphia, Pennsylvania
Growing, Connecting, and Protecting through Immunization Registries Walter A. Orenstein, M.D. Director National Immunization Program Centers for Disease Control and Prevention
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
Meeting the Expectation • Progress to date • Important elements for building registry success • Benefits and contributions of immunization registries • The future
Children < 6 years with 2+ Immunizations, 2001 Overall = 44% Source: National Immunization Program Annual Report, 2001
Important Elements for Building Registry Success • Provider participation • Data quality • Data use • Parent/guardian participation • Privacy and confidentiality • Adequate resources and funding
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
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.
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
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
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.
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
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).
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
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
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
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
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.
Registry Certification, cont. • All stakeholders feel that certification should be voluntary. • Registry certification awaits • Evaluate certification pilots • Finalize certification protocol • Identify certification contractor
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
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
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
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.”
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
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