The Framework for Integrated Child Health Information Systems

1. The Framework for Integrated Child Health Information Systems Ellen Wild, MPH Public Health Informatics Institute

2. Presentation Overview • The Framework for Integrated Information Systems • History • Principles, Core Functions & Measures • Findings • Connections Community of Practice • What’s a CoP • Products • Lessons Learned

3. Framework • Provide guidance to states in the development of integrated child health information systems. • Funded by HRSA/GSB • Includes: • Principles - purpose and intent • Core functions • Performance measures to evaluate effectiveness in providing essential information

4. Approach • Collaborative 3 year process • Convened a Workgroup to draft the sections • Review group provided comments • Feasibility Survey • Site Visits • Pilot test of performance measures • Final Recommendations of Workgroup

5. Workgroup Members • Newborn Dried Blood Spot Screening • Newborn Hearing Screening • Vital Records • Immunization Registries • Public Health Laboratories • Private Physicians • Parents

6. Principles • General purpose – 1 • Security & confidentiality – 6 • Technology serving stakeholder needs– 9 • Quality assurance & evaluation – 3 • Financing – 1 • Total – 20

7. Core Functions • Confidentiality & security – 1 • Establish & maintain client records – 3 • Service functionality – 5 • Technical functionality – 4 • Reports – 3 • Total – 16

8. Performance Measures • How well the integrated system supports the information needs of the participating programs (VR, IZ, NDBS, NHS) • Combination of completeness and timeliness measures • Feasible to measure on an on-going basis • Sensitive to change over time • Change must mean something (e.g., progress, problems)

9. Establishing Records PM 1A - Percent of newborns with a record in the integrated child health information system (ICHIS) PM 1B - Percent of records of live births occurring in the jurisdiction that were established within 0-2, 3-7, 8-14, 15-30, and >30 days of birth

10. Integrated Record PM 2A - Percent of records that include data on dried blood spot screening, hearing screening, immunization, and vital registration PM 2B - Percent of records that include data on the four program elements (dried blood spot screening, hearing screening, immunization, and vital registration) within 90 days of birth

11. Immunization PM 3A - Percent of records with immunization information available PM 3B - Percent of records with immunization information available within 30 days of administration for children less than 6 years of age

12. Newborn Dried Blood Spot PM 4A - Percent of records with newborn dried blood spot screening information available PM 4B - Percent of records with newborn dried blood spot screening status available within two days of receipt of report from laboratory

13. Newborn Hearing Screening PM 5A - Percent of records with newborn hearing screening results available PM 5B - Percent of records with newborn hearing screening results available within specified time intervals for screening – 0-2, 3-7, 8-14, 15-30, >30 days of birth

14. Newborn Hearing Screening Follow-up PM 6 - Percent of children who did not pass initial hearing screening AND who are enrolled in/referred to an early intervention or other appropriate program OR found not to have hearing loss by 6 months of age

15. Newborn Dried Blood Spot Screening Follow-up PM 7A - Percent of children with out-of-range congenital hypothyroidism screening results who have been diagnosed AND are under appropriate management by 21 days of birth PM 7B - Percent of children with hemoglobin screening results suggesting either Sickle Cell Anemia, Sickle C disease or Beta Thalassemia, who have been evaluated and are under appropriate management by 2 months of age

16. Findings • None of the states was currently able to report on all measures - all said they would in the future. • Difficult to come up with measures intended to document impact of integrating systems – as distinct from the impact of the individual programs. • Collaborative approach is difficult but lends credibility. • Measures will continue to evolve with experience – not complete set.

17. Communities of Practice • “Groups of people who share a concern, a set of problems or a passion about a topic and who deepen their knowledge and expertise in this area by interacting on an ongoing basis.” • Cultivating communities - knowledge management strategy. • Members engage in collaborative problem solving, share best practices and lessons learned.

18. It’s not like baking a cake • CoPs have been success when dealing with complex, issues where there is no simple formula for success, like CHIS. • Tacit knowledge – the stuff each of us knows but can’t explain easily – needs to be elicited. (ie. best practices). • Sharing experiences, the tacit knowledge, can help achieve your goals.

19. 18 state and local public health departments members. • Funded by the HRSA/MCHB Genetic Services Branch. • Started in June 2004 – has funding until June 2006.

20. Connections Member Agencies

21. Connections Framework • Monthly Conference Calls • 2 Webcasts • Interactive website – ConnectionsZone • Three community-wide face-to-face meetings within the 2 year period • Bi-monthly e-Newsletters • 2 workgroups to focus on specific issues

22. Our Workgroup Approach • Convene small workgroups to focus on specific issues identified by the members. • Workgroups include representatives from Connections member-sites plus invited experts. • Goal is to develop quality products that are practical and useful to integrated information systems developers.

23. Unique Records Workgroup • Addresses issues around matching, merging or linking disparate records for an individual. • 12 members including Connections members, federal agency representatives and other invited experts. • Timeline – Group began in Feb, met in March and will produce a product by February 2006.

24. Unique Record Workgroup Product • Product: A portfolio that contains • Overview of Matching, Linking and Merging Concepts: • Categorization of approaches to identifying unique individuals (e.g., MPI) • Common Software Architecture descriptions • Matching/Linking methodologies

25. URW Product Cont. • A Project Questionnaire • Metrics and Evaluation • Self-Assessment Checklist to manage and monitor deduplication processes and impact • Glossary

26. CoP Lessons Learned • Enterprise level systems change, such as integrating CHIS, requires collaboration. • Communities of Practice can strengthen collaboration. • They can be productive: • Generate knowledge products • Build relationships

27. CoP Lessons Learned Cont. • Dedicated resources – staff and money. • CoPs are organic and need to be nurtured: • Master facilitating session • Understanding the issues members are facing • Cultivating relationships among members, building trust

28. Contact Information Ellen Wild 404-687-5607 www.phii.org ewild@taskforce.org