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

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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

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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/investiga
  tive use of a commercial product/device in my
  presentation.

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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

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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
• gt30 year history of collaboration with both
  medical centers
• Office hours 365 days/year
• Evening/weekend office hours
• Nighttime Nurse triage and daytime advice nurses

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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)

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Essential Components of a Medical Home System

• Relationships
• Ready Access
• Registry
• Resources
• Reimbursement
• Recruitment

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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

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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

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Imagine

• Staff recognizing a parent when appt. is made
• Adequate time scheduled for that child
• Specialists 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

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Registry - Knowing Who Needs Care

• Schedulers give adequate time for appointment
• Alerts staff and providers to special needs
• Identifies for Care Coordination and PVCs
  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)

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Define CSHCNCAMHI Screener

• Medicine prescribed by a doctor
• Condition lasting gt1 yr.
• Needs more health care than other same-age kids
• Ability limitations
• Special therapy
• Counselling

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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

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Complexity Scores--Who needs what?

• More time?
• Communication devices?
• Technological support?
• Translator?
• Pre-Visit Contact?

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Care Coordinators Use Registry for Pre-Visit
Contacts

• Care coordinator screens schedule for upcoming
  CSHCN physicals
• The childs MD assesses childs 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

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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

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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

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Registry permits data collection to
document value of Medical Home
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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

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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