Issues in Integrating Child Health Information Systems

1. Issues in Integrating Child Health Information Systems MCH-EPI Conference December 8, 2005 Kristin Saarlas, MPH

2. Presentations will address the following questions: • Why integrate child health information systems? • How do I know if the benefits of integration are worth the costs? • What are the functions of an ICHIS and how do we know if it successful? • What is a community of practice and what is it doing to forward our thinking in this area? • What are states learning about developing successful ICHIS and their impact on the lives of children and families?

3. Session Overview • Background on integrated child health information systems (ICHIS) • Development of a business case on ICHIS • A framework for ICHIS: principles, core fxns, and performance measures • Connections: A Community of Practice • First hand experiences from 2 states: Oregon and Colorado

4. A bit of background • Public Health Informatics Institute is located within a non-profit organization and funded primarily by RWJF, HRSA/MCHB, and CDC. • Mission is to advance public health practitioners’ ability to strategically manage and apply health information systems. • Work in child health information systems has included: • 13 year All Kids Count National Program (RWJF supported) where we worked with over 30 state and LHDs to develop immunization registries and ICHIS, • Developing a business case and framework for integrating NBS w/other CHIS funded by HRSA & RWJF • Supporting a Community of Practice with the HRSA/MCHB integration grantees (SPRANS grants) to identify and share best practices

5. Why do we need integrated CHIS? • Many children do not receive all preventive or therapeutic services in a timely manner • Several studies have found low immunization coverage rates to be correlated with insufficient screening for lead and anemia • Multiple PH programs focus on the same target population w/o coordination of services & outreach • There is a need for population-based information that can better identify at-risk children and target programs and services to their needs

7. Goal of integrated CHIS • To provide all appropriate information to patients/families, providers, and programs so they can make timely and accurate decisions on the delivery of care, assess population needs and assure services and follow up care are being provided. • Premise that better (complete and timely) information leads to improved service delivery and improved health outcomes for children. • Integration - providing a range of information to the end user in a simple, comprehensive format so he/she can readily take all indicated actions. We refer to integration of data to the end user regardless of the IT/IS model.

8. Targeted programs/systems for integration 1st tier • Immunizations (immunization registries) • Newborn dried blood spot (NDBS) screening • Early hearing detection and intervention (EHDI) • Vital registration 2nd tier • WIC • Lead screening • Medicaid/EPSDT • Birth defects surveillance • Early Intervention

9. Why these? Top 4 areas chosen share characteristics: • Recommended for all infants/children • Carried out/begin in newborn period • Time-sensitive • Primarily delivered in private sector but have strong public sector component • Mandated in most/all states

10. Use of Data Many challenges to integration • Requires collaboration/communication between all stakeholders: governance of data sharing • Leadership and perceived need • Challenge of linking disparate pre-existing systems: Issues of deduplication of data from years of categorical funding ⇨ program information silos that may not be compatible with other information systems

11. Key Elements for Success • Leadership • Project governance • Project management • Stakeholder involvement • Organization and technical strategy • Technical support and coordination • Financial support and management • Policy support • Evaluation

13. Business case on ICHIS • What is a business case and why do we need one? • States need to justify return on their investment due to limited resources • Increasing focus on measuring outcomes • Need for sustainable funding • A business case provides a model to quantify benefits and costs • Flexible: various state and local models and future growth of ICHIS

14. Process for development • Hired Lewin Group health economist: Tim Dall in April • Formed workgroup of stakeholders from PH, private physicians, family advocates, health plans • Solicited input from expert health economists and program specialists • Researched literature • Site visit to RI in Nov; will beta test in selected states in Jan • Training of states, LHDs in spring • Use the model, continuous improvement

15. Programs included • Immunizations (immunization registries) • Newborn dried blood spot screening systems (NDBS) • Early Hearing, Detection and Intervention program (EHDI) • Lead • EPSDT • WIC • Birth Defects

16. Integration Benefits • Focus on improved effectiveness of services, efficiency, quality of care, coordination of care, health outcomes • Areas of Benefits: • Benefits to Families • Benefits to Physicians/providers • Public Health Decisions • Data Quality • Case Management

17. Benefits to Families • Parents have access to CHIS information in consolidated format • Reminders/recalls • Convenience when moving/changing providers • Time saved (scheduling appts, missing records, reduced data entry) • Reduced visits/efficiency and coordination of care • Improved health outcomes (reduced lifetime care costs, increased earnings of family/child)

18. Benefits to providers • Providers have access to data they didn’t have before • Reduce chart pulls if electronic access is available • Quality of care—reduction in duplicative services, timeliness of care, pay for performance • Increased number of visits? Increased revenues?

19. Benefits to public health • Assess risk factors to completeness of care • ID medical home and health care utilization rates • Linkage to other data—hospital discharge, education, social services • Long term surveillance—population trends • Quality assurance—public health role • Changes in policies?

20. Challenges to developing a business case • Added/marginal value of integration vs value of programs and independent systems • Lack of data on costs and benefits on individual programs and IS • Change in behavior that integration of data brings—i.e., data not available now to physicians, who’s responsible for follow up • ROI not always basis for decision making

21. Conclusions • Integration of child health information systems continues to progress among states • Many models to learn from • Most states still in planning or early implementation • Need leadership and sustained funding • Use of integrated data necessary to sustainability

22. Acknowledgements • PHII staff:, Dave Ross, Ellen Wild, Alan Hinman, Terry Hastings • HRSA/MCHB: Debbie Linzer, Michele Puryear, Marie Mann • AKC and HRSA Connections members

23. Thank You! Contact Information: Kristin Saarlas Deputy Director Ksaarlas@phii.org www.phii.org