CHILD HEALTH DATA AND
INDICATORS
Perspectives for Improving
Data Access and Surveillance
Jeannette Sample
Environmental Public Health Tracking
Barbara Dalbec
CYSHN Director
Brownbag Agenda
• Environmental Public Health Tracking
• Program overview
• Improving access to child health data and indicators
• Demonstration of MN Public Health Data Access
• Children & Youth with Special Health
Needs
• Program overview
• Improving surveillance of child health data and
indicators
• Questions and Discussion
EPHT
Environmental Public
Health Tracking
What is Environmental Public Health
Tracking (EPHT)?
Air Quality
Drinking Water
Childhood lead
poisoning
Asthma, COPD
PFCs
CO poisonings
Mercury
Birth defects
Heart attacks
Birth outcomes
Heat-stress
Cancer
National Tracking Network
• Pew Report and the environmental health gap
(2000)
• Congress provides CDC funding to establish the
National Tracking Network (2002)
• Support integration of data collected by a wide variety of
health and environmental agencies
• Develop nationally consistent data and measures
• Online Tracking Network launched (2009)
• Make hazard, exposure, and health data accessible to
the public
Tracking Grantees
https://apps.health.state.mn.us/mndata
Looking Ahead
• Updates
• Reproductive and birth outcomes
• Blood lead poisonings
• Asthma, COPD
• Heart attack
• Evaluating new topic areas
• Pesticide poisonings
• Private well water
• Radon
• Population characteristics
• Developmental disabilities
Developmental Disabilities
• EPHT Statutes call for including “chronic diseases
including, but not limited to, cancer, respiratory diseases,
reproductive problems, birth defects, neurologic diseases,
and developmental disorders.”
• Data on national portal
• CDC's Autism and Developmental Disabilities Monitoring (ADDM)
Network
• Department of Education's Individuals with Disabilities Education
Act (IDEA)
• Partnering with CYSHN to evaluate data sources for MN
EPHT
CYSHN
Children and Youth with
Special Health Needs
Children & Youth with Special Health
Needs (CYSHN) Section
• Monitors and reports the health and well-being of children
and youth with special health needs
• Engages in the development, coordination and support of
state and local systems for children with special health
needs
• Serves in an advisory capacity to a variety of policy-
making bodies to assure the interests of children with
special health needs are considered
Population Definition
“Children with special health needs are those children who
have or are at increased risk for a chronic physical,
developmental, behavioral, or emotional condition and who
also require health and related services of a type or amount
beyond that required for children generally.”
Maternal Child Health Bureau
CYSHN in Minnesota
• In 2009-10 there are an estimated 179,000 (14.3%)
children and youth with special health needs (0-18 years)
• Increase from 2001 (12.4%)
• Excludes those at-risk populations
National Survey of Children with Special Health Needs 2009-10
What is Title V?
• Funding provided through the Social Security Act; Maternal
Child Health Bureau/HRSA
• Federal Title V Block Grant provides funds to every state and
territory.
• Moving away from direct services to other core functions
• Supports efforts within both public & private sectors to monitor
health-related services
• MN gives 2/3 of the funding dollars to local public health
agencies
Minnesota Needs Assessment Goals
• Determine Minnesota’s priority needs for the maternal and
child health (MCH) and children and youth with special
health needs (CYSHN) populations;
• Enhance the stakeholders’ and MDH staff’s commitment
and participation to the priority needs; and
• Increase the state’s commitment to addressing the final
priorities.
What is currently being measured?
• National Performance Measures
• State Performance Measures
• Health Status Indicators
• Health Outcome Measures
• Health System Capacity Measures
• LPH Activities/outcomes
National Performance Measures
Core Outcomes of Quality for Systems of Care
Goal: All children with special health needs will receive coordinated ongoing
comprehensive care within a health care home (medical home)
• The percent of children with special health needs age 0 to 18 who
receive coordinated, ongoing, comprehensive care within a medical
home.
2001
2005/06
48.7%
51.8%
2009/10
48%
National Survey of Children with Special Health Needs, 2001, 2005-06, 2009-10
Health Care Home Activities
Health Care Home District Staff assigned throughout the state:
• Promote coordinated, comprehensive care for children with special
health needs
• Support the establishment of health care homes throughout the
state
• Develop local capacity in assuring access to quality services
including Early Intervention, specialty care, social services, WIC
• Promote interagency collaboration and coordination between other
state agencies to assure access to high quality care for children
• Certification of 171 clinics as health care homes includes pediatric
health care homes
Minnesota Birth Defects Surveillance
• MN State Legislature in 2004 defined in MS §144.2215
• Families can choose their identifying information be removed (optout)
• Initiated in Ramsey and Hennepin County Hospitals
• Includes 45 selected structural defects
• Diagnosed by 1 year of age
• 2009 MN State Legislature Funding
• Allows expansion
• Started with Hospitals & Clinics in the 7 county metro area, Mayo
Health System, St. Cloud Hospital & Centra Care Clinics
• Additional hospitals will be recruited in a phased approach
The Opt-Out Clause
• Statute allows parents to “request
removal at any time personal
identifying information concerning a
child”
• Upon validation of a case, MDH
contacts parents in writing
• Explains data use and protection
• Reviews benefits of the system, and
• Provides form required to opt out
• About 4% of parents opt out
• Anonymized medical info remains in the
information system
MDH Birth Defects Monitoring and Analysis
Monitors trends of birth defects
Accurately targets intervention, prevention, and
services for communities, patients and their families
Informs citizens and health professionals of the
prevalence and risks for birth defects
Participates in scientific investigation of potential
causes and prevention of birth defects
How do we use birth defects surveillance data?
Monitoring rates
Service referrals
• Annual reports
include Minnesotaspecific rates
• Prevalence changes
over time
• Notification of
cases to Local
Public Health
agencies
Prevention planning
Research studies
• Folic acid intake
prevents many
neural tube defects
• Preconception
health promotion
grant program
• What are causes
of birth defects?
• Can they be
prevented?
2007 Early Hearing Detection &
Intervention (EHDI) MN Legislation
MN Statute 144.966
• Mandated newborn hearing
screening
• Mandated reporting to MDH
• Added hearing to newborn
screening panel (54 total)
• Voluntary screening started
in MN in 1997
Number of Infants/Children
Confirmed Permanent Hearing Loss
200
150
133
174
176
2010
2011
148
100
50
0
2008
2009
Year Reported to MDH
Enrolled in Part C Services
80%
67%
67%
2010
2011
60%
40%
23%
20%
0%
2009
Year Reported to MDH
Enrolled in Part C Services
80%
67%
67%
60%
2011 Goal
= 60%
40%
23%
20%
0%
2009
2010
2011
Year Reported to MDH
Part C Services before 6 months of age
80%
70%
60%
62%
53%
40%
20%
0%
2009
2010
2011
Year Reported to MDH
Part C Services before 6 months of age
80%
2011 Goal
= 75%
70%
60%
62%
53%
40%
20%
0%
2009
2010
2011
Year Reported to MDH
Autism/Developmental Delay
• Growing concerns from community
• CDC Autism Prevalence Data increases from
1/110 (2008) to 1/88 (2012)
• In MN alone, the number of children enrolled in
special education for ASD has increased
approximately 446% over 10 years (MDE child
count data)
• CDC funds only 10 states for autism surveillance
Legislative Autism Task Force
Developing a statewide strategic plan focused on:
• improving awareness
• early diagnosis & intervention
• ensuring delivery of treatment and services
• Cost effective treatments and services
throughout the individuals life time
Autism Qualitative Study
• Legislature allocated $200,000 to Department of Health to
complete qualitative study in partnership with U of MN
• Focus on cultural and resource-based aspects of autism
spectrum disorders that are unique to Somali community.
• Create a report including the findings of the study
• In addition to recommendations as to the establishment of
a population-based public health surveillance system for
ASD
Integrated Child Health Information
Systems
• Integrated Child Health Information Systems
• Investing in Our Children Initiative
• Early Hearing Detection & Intervention (MDH/MDE) –
Interagency Data Use Agreement
• Race to the Top: Early Learning Challenge
• $45 million to improve results for young children, builds capacity
and accountability into the learning system
• Includes Early Childhood Longitudinal Data Collection
• Multi-agency data linkage (MDE, DHS, & MDH)
CYSHN Surveillance Challenges
• Out of state births
• Electronic data exchange (Large number of data systems)
• Data Practices Act
• NBS Lawsuit
DISCUSSION
Contact Information
Jeannette Sample
EPHT
651-201-3532
[email protected]
Barb Dalbec
CYSHN Director
651-201-3758
[email protected]