1. Integrating Child Health Information Systems in Oregon Sherry Spence, MA Oregon Department of Human Services Health Services, Office of Family Health Supported in part by funding from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, US Department of Health and Human Services

2. Local Acknowledgements n Public Health Administrators and Professionals n Donalda Dodson, RN, MPH, Office of Family Health Administrator, Oregon Title V Director n FamilyNet Family & Child Module Core Team –Al Ferro, MCH Research Analyst –Annabelle Hiegel, Database Modeler –Wendi Johnson, MPH, Program Coordinator –Kendall Johnson, Project Support –Jean Kennedy, Business Analyst –Eve Pepos, Research Analyst –Ravi Sathyanarayana, Lead Developer –Joe Shapiro, IT Project Director

3. National Acknowledgements n Association of Maternal and Child Health Programs n Association of State and Territorial Health Officials n Centers for Disease Control and Prevention n Council of State and Territorial Epidemiologists n Health Resources and Services Administration n National Association of County and City Health Officials n National Association for Public Health Statistics and Information Systems n Public Health Informatics Institute n State Public Health Agencies and their data systems

4. CLIENT MASTER WIC TWIST Immunization IRIS Women’s and Reproductive Health Day Care Nurse Consulting ALERT Immunization Registry Family and Child Module School Based Health Centers Enhancing healthcare communication

5. Getting Started n Define where we want to be n Map how we’ll get there –Identify the executive sponsor and steering committee –Start from where we are –Develop - and use - a strategic plan –Seek funding based on the plan

6. Defining the Process Define What We Need, Not How We’ll Get It n Family and child data in one system n Local Users - Public and private providers n Data available for local, statewide, and national use for surveillance, evaluation, and research n Security & confidentiality maintained –Within Program and Organization –Among Programs and Organizations

7. Where Oregon Wanted to Be ( Unique Like Everybody Else) n One system of care n Early identification n Coordinated action n Health profiles n Population surveillance and program outcome monitoring n Program administration

8. Where Oregon Wanted to Be (Unique Like Oregon)

9. Infant Child Consolidated Data of FamilyNet Define How We’ll Get There Child and Family Program or Population Pregnant or Post-Partum Woman Maternal and Child HealthImmunization WIC Authorized access by health care/public health/social service provider, program manager, analyst Solid Lines – information flow currently exists Dotted Lines – In development Immunization Registry with shot records from private and public clinics IRIS TWIST FCM

10. Dried Blood Spot Screening FamilyNet CLIENT MASTER Family and Child Module Birth Certificate Linked Newborn Data Hearing Screening Local Services to Children with Special Health Needs Population, Program, and Individual Reporting Enhancing healthcare communication Probabilistic Matching

12. Develop Technical Strategy n Review the successes of others –Why did this succeed? n Review current internal capacity –Can we maintain this? n Plan for the future –Can we maintain this in five years?

13. Lessons Learned n Separate activities are linked activities n Not simple, low-cost, or short-term n Directness and persistence balanced with respect for organizational culture n Maintain the balance of scope, time, and resources n This is the means, not the end.

14. Lessons Learned Building a statewide integrated data system is like using the crust to cross a bed of hot lava: as long as you keep moving toward your goal and don’t step into anything too hot, you have to assume things are going OK.

15. Lessons Learned The Information Revolution differs from the Industrial Revolution in that the value of information increases with use. -- David Ross Center for Innovation in Health Information Systems All Kids Count Connections Meeting, Fall 2002

16. Contact Information n sherry.spence@state.or.us n FamilyNet’s Family and Child Module Prototype –http://170.104.158.25:81/ –Website has feedback/e-mail capability