1. Immunization Registries and Public Health 2004 National Immunization Conference May 2004 Nashville, Tennessee

2. Authors Katie Reed, MPA Partners In Health Systems, LLC Cynthia O’Connor, MPA Apter & O’Connor Associates Representing Onondaga County Health Department

3. Setting the Stage NOT TECHNICAL NOT STATISTICAL NOT RESEARCH ORIENTED IT IS ALL ABOUT APPLIED LEARNING

4. Registry Realities Many public health programs are tasked to collect similar data. Registries are growing around us, many different flavors, yet all collecting at least immunization data. Registries must take the initiative to remind the community of the valuable tool that already exists!!! No need to recreate the world.

5. Registry Challenges Trying to determine the benefit of collaboration, when do we start - when we reach 100% saturation? 50% Saturation? Data Quality is on everyone's mind. Recruitment leads to better utilization which leads to more participants, just one big circle… But which comes first….. Chicken? Egg?

6. Background Population-based 14 county Regional Registry, part of NYSIIS Onondaga County Lead Agency, Syracuse New York Data collection began in 1998 Voluntary physician participation Signed consent required 100% public participation, 75% private

7. CNYIR Objective Establish the use of Registry data within public health programs. Encourage timely immunizations. Encourage the use of the medical home.

8. Partners Onondaga County Lead Program Onondaga County WIC Program Syracuse Healthy Start – Infant Mortality Syracuse City School Districts

9. Lead Program Received lead test lab results from NYS via LeadTrac. Looking for ways to further refine Lead follow up and outreach, targeted to physicians and parents. Registry wanted to provide physicians electronic access to their lead records. Registry consent included the sharing of lead records.

10. Process Since this involved the flow of data, first began by testing bi-directional flow of data into test databases. Determined how often – bi-monthly Resolved Data Quality differences – merging algorithms are different based on different elements for verification meaning each program owned the final 10% of the merging process Identified Consent Issues – reprocessing of data

11. Current Status Lead program receives names of children with no lead test with more current address and PCP. Registry went from around 5000 lead records to over 20,000 records for kids under 6 and are able to download these to provider databases.

12. WIC, Healthy Start and Schools All need immunization data to fulfill their mandates. Varying levels of data accessible to them, if any. Targeted programs in the region with 50% or higher registry saturation of children.

13. HEALTHY START Infant Mortality Prevention Project - In Their Own Words... We’ve been working with CNYIR for 2 years. The CNYIR information is beneficial – populates our HS Registry with immunization records. CNYIR data allows us to track individual children delayed for immunizations and provide timely follow-up. CNYIR provides data required by our funding source. This partnership has been positive for both systems and in the end benefits the community. Staff/Technical support have been outstanding.

14. WIC, In their own words… Having the registry at WIC is definitely a plus for WIC. We do screen for immunizations and the CNYIR provides quick access for the majority of our patients (Many of our families receive their health care at the larger health care clinics who are participating sites). Frequently parents will forget to bring their own record of their children's immunizations and again the CNYIR provides quick access to the record. Of course going to the registry is another step in the many tasks WIC staff has to accomplish BUT is great having this information available when needed. One problem we have had - at times the registry is not up to date....it is only as good as the information the doctor's office puts into it.

15. Schools Schools have a huge amount of interest, we don’t recruit them they recruit us. At our 5th birthday party, kindergarten class all from area school came and were all in the registry. Helping us get the word out to the physicians of how this can save time.

16. Lessons Learned Start NOW!! It is never too early to collaborate. Educate yourself about other programs and their data needs. Be prepared to initiate the conversation and look for areas to work together.

17. Contact Information Katie Reed Partners In Health Systems 5789 Widewaters Parkway Dewitt, NY 13214 315-446-1612 x7217 kreed@phs-us.com