Using Registries for the Care of Children with Special Health Care Needs (CSHCN)

1. Using Registries for the Care of Children with Special Health Care Needs (CSHCN) “A Registry of CSHCN in the Primary Care Medical Home” Jennifer Lail, MD, FAAP September 19, 2007

2. Disclaimer • I have no relevant financial relationships with the manufacturers(s) of any commercial products(s) and/or provider of commercial services discussed in this CME activity. • I do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation.

3. Learning Objectives • Utilize the framework for improving care of chronic illness • Apply a registry for identifying and managing children with specific illnesses • Identify the IT resources needed to support a registry

4. Chapel Hill Pediatrics and Adolescents, P.A. • Suburban Private Practice, 2 offices • Duke University and University of NC Medical Centers within 15 miles • 11 MD providers, 6 F.T.E. • 84% Managed Care • 7.6% Private Pay • 8.4% Medicaid • >30 year history of collaboration with both medical centers • Office hours 365 days/year • Evening/weekend office hours • Nighttime Nurse triage and daytime advice nurses

5. Every Child Deserves a Medical Home…. American Academy of Pediatrics • “A medical home combines place, process and people— • The central place where primary care is provided • The process and scope of care in that place, and • The team of people delivering and coordinating care” (www.medicalhomeimprovement.org)

6. Essential Components of a Medical Home System • Relationships • Ready Access • Registry • Resources • Reimbursement • Recruitment

7. Why a Registry? • To improve and streamline clinical care processes, especially for our higher-need patients • To improve documentation of services and to permit data collection for clinical and administrative benefit

8. From Random to Registry • Represented NC at NICHQ Medical Home Learning Collaborative I with 12 other states in 2003 • Now over 1050 CSHCN in registry • Began registry by: ~ MD recall ~ Computer recall by dx ~ Identification in process of care • Notebooks  Excel  Access  EMR • Linked registry to appointment scheduling (“SPECIAL”) and care coordination services for visible clinical benefit; problem list in chart gives summary • Dx of CSHCN via CAMHI screener

9. Imagine: • Staff recognizing a parent when appt. is made • Adequate time scheduled for that child • Specialist’s records in your hands prior to the visit, including lab and X-ray results • Parent concerns identified before the visit • Lab slips ready, and EMLA cream on child prior to visit • Help by your staff for families with referrals, resources, equipment

10. Registry - Knowing Who Needs Care • Schedulers give adequate time for appointment • Alerts staff and providers to special needs • Identifies for Care Coordination and PVC’s = Pre-Visit Contacts • Helps make and track referrals • Permits grouping by diagnosis for care planning, screening programs and parent support links • Proactive care for chronic conditions (flu shots, checkups, Synagis, SBE prophylaxis changes)

11. Define CSHCN—CAMHI Screener • Medicine prescribed by a doctor • Condition lasting >1 yr. • Needs more health care than other same-age kids • Ability limitations • Special therapy • Counselling

12. Care Coordinators Maintain Registry • MD requests help by form • Care Coordinators enter CSHCN in Registry and Admin. system (now blended in EMR) • This form begins the process for registry, complexity scores, pre-visit contacts, referrals, support resources

13. Complexity Scores--Who needs what? • More time? • Communication devices? • Technological support? • Translator? • Pre-Visit Contact?

14. Care Coordinators Use Registry for Pre-Visit Contacts • Care coordinator screens schedule for upcoming CSHCN physicals • The child’s MD assesses child’s complexity and requests PVC • Care Coordinator makes call to parent. • Parent concerns are identified • Labs (and pain control!) are anticipated and scheduled for • Consultant notes are available • ED and specialty visits are noted • New issues/special needs are anticipated

15. Other Clinical Registry Uses • Asthma care template • ADHD care template • Family survey • Invitation to meeting with school nurses/administrators • Chart preparation for EMR • Potential for help in Disasters (EMS) • Beginning work on Obesity • Initiatives on Transition to Adult Care

16. Administrative Benefits of Registry • Recall by diagnosis for educational or research opportunities • Recall by diagnosis for Flu shots, Synagis • Surveillance for annual checkups • Episodic care is “captured” • Pay-for-Performance Program • Documentation of Value of QI efforts with Insurers

17. Registry permits data collection to document value of Medical Home

18. Optimal Registry needs: • Software for registries compatible and linked with office-based management systems • Funding/support for EMR/data entry for Medical Home practices • On-line data bases of services and supports by dx. for parent access • HIPAA protection for registry use for clinical care • Pt. care planning capacities by dx • Electronic care plans • Electronic capacity to deal with pediatric “high-severity, low frequency” diagnoses

19. Summary of Registry Benefits • Ready identification of higher-need population of patients • Ability to predict and plan for patient encounters • Links between practice parameters and care protocols and the individual pt. • Documentation of more intensive service for coding and reimbursement • Potential for tracking QI and Rx efficacy • Planned care saves healthcare dollars