a tool to promote developmental screening in young children...may 21, 2015 · - apgar score -...
TRANSCRIPT
KIDSNET
A tool to promote developmental screening
in young children
Ellen Amore, KIDSNET Manager
Rhode Island Department of Health
Northeast Regional Developmental Screening,
Referral and Response Conference
May 21, 2015
What is KIDSNET?
A Public Health Program –
not an electronic medical record
Integrated Child Health Information System
for maternal and child health programs
Facilitates the collection and appropriate
sharing of health data by authorized users
for the provision of timely and appropriate
preventive health services and follow up
KIDSNET Vision and Mission
Vision: All RI children receive appropriate
and timely preventive healthcare as a result of
access to and utilization of comprehensive
data on preventive health services by
authorized users.
Mission: KIDSNET facilitates the collection
and appropriate sharing of health data with
healthcare providers, parents, MCH programs
and other child service providers for the
provision of timely and appropriate preventive
health services and follow up.
KIDSNET Historical Context
Multiple Funding Streams
Overlapping Reporting requirements
Program culture
– Work in isolation
– Data as a proprietary possession- often unused
Budget pressure to “stick to core responsibilities”
KIDSNET Historical Context, cont‘d
Multiple programs with data/tracking responsibilities
All needed electronic information systems – not enough money to do solo systems right
Multiple programs tracking the same child
Families and primary care providers frustrated – competition for attention, redundant information collection, poor support
While some children received redundant services, others received none
Primary care model of public health but medical homes not always “in the loop”
KIDSNET Partner Programs
7 Universal:
Newborn
Developmental Risk
Newborn Bloodspot
Screening
Newborn Hearing
Assessment
Immunization
Childhood Lead
Poisoning
Vital Records
Child Outreach
10 Targeted:
WIC
Early
Intervention
Family Visiting
Birth Defects
CEDARR**
(information and referral
about services and
supports for children
enrolled in Medicaid
who have disabilities
and special needs)
Healthy Weight
Asthma
Early Childhood
Developmental
Screening
Foster Care*
Head Start **
* No Web access **in development
KIDSNET Users
Medical Care Providers
Maternal & Child Health Programs
Head Start and Child Care Agencies
Schools/Child Outreach
Home Visitors
Certified Lead Centers
Audiologists
Managed Care Organizations
Early Intervention
WIC
CEDARR Centers (information and referral about services and support options for children enrolled in Medicaid who have disabilities and special needs)
Births from January 1,1997 and later
Records initiated at birth or first
contact with KIDSNET Program
Hybrid data model (warehouse vs. complete)
Records are updated after services are
received from direct data entry or electronic
file submission from programs and providers
KIDSNET Data Capture
Developmental Screening
Newborn Developmental Risk
Birth to Three
Three to Five
Newborn Developmental Risk
Screening
IDEA (Individuals with Disabilities Act) “Child Find” requirement for states to seek out children at risk for developmental challenges and intervene early
The Rhode Island system is: 1) Developmental risk assessment followed by family visits 2) Screening of actual development, resources, supports and home environment 3) Referral to Early Intervention /other community resources
Who receives a developmental
risk assessment?
All infants born in Rhode Island maternity hospitals
Infants transferred to RI maternity hospitals if family resides in RI
Demographic information used in communication, reporting, data analysis
Language spoken in the home for written and oral communication with families
Insurance status
Prenatal care information
What data are collected?
What data are collected? Cont’d.
Newborn immunizations and hepatitis B status for tracking and follow-up
Alternate contact information to reach families in emergencies such as life threatening conditions identified through newborn screening
Community primary care provider for follow-up and care coordination
Breast feeding data
Known developmental risk factors
Developmental Risk Factors
• Child Characteristics - APGAR Score
- Gestational age
- Growth parameters
- Hearing screen
- HEP B risk
- Intensive care
• Parental
Characteristics - DCYF
- Chronic illness
- Developmental disabilities
- Mental health history
- Inadequate prenatal care
- Substance use
• Parental
Demographics - Caregiver’s education
- Caregiver’s marital status
- Maternal age
- # children living in home
• Established
Conditions - Chromosomal anomalies
- Developmental disability
- Genetic disorder
- Inborn error in
metabolism
- Infectious disease
- Sensory disorder
- Toxic exposure
Where do the data come from?
Delivery sheet
Birth certificate worksheet
Hospital data systems
Hospital staff
Child’s medical record if indicated
How are the data used?
Referral to Family Visiting
Assurance, tracking and follow-up for newborn blood spot, hearing and hepatitis
Policy development for newborn and early childhood programs
Analyzing key maternal and child health indicators and trends
Opens records in KIDSNET to assure and promote public health preventive services throughout childhood
Birth to Three
Data Sources
Family Visiting
Electronic Web-based Screening (Child Health and Development Interactive System-CHADIS, Patient Tools)
Electronic Web-based Screening
Primary Care provider subscribes to service
Parent completed tools (Survey of Well-Being in Young Children-SWYC, Ages and Stages Questionnaire - ASQ)
Recommendations for Physicians NEXT DUE
Developmental Screening: Recommended at 9 ,18, 30 months
DUE NOW
Autism Screening: Recommended 18 and 24 months
DUE FUTURE at 18 months
Click here for EPSDT schedule
Recommendations for Physicians NEXT DUE
Developmental Screening: Recommended at 9 ,18, 30 months
DUE NOW
Autism Screening: Recommended 18 and 24 months
Recommended Screening COMPLETE Future Screening at Provider Discretion
Click here for EPSDT schedule
Three to Five
Data Sources
Electronic Web-based Screening
Child Outreach (Child Find)
Beyond Age 5 – in development
Link to Early Childhood Education Data System at Dept. of Education
Standardized test scores
Other school outcomes
Aggregate data only to answer key policy questions
Who can access what data?
Access is granted on a need to know basis (role based access)
Programs, not KIDSNET, determine who can access their program data
Parents are informed at several time points and may “opt out” of display of their child’s information
Display is blocked if parental notification letter is returned as undeliverable
Signed consent is not obtained except at the program levels where the program is required or prefers to get signed consent
What About HIPAA?
The Privacy Rule expressly permits
public health information (PHI) to be
shared for specified public health
purposes….. Further, the Privacy Rule
permits covered entities to make
disclosures that are required by other
laws, including laws that require
disclosures for public health purposes
KIDSNET KIDSNET
State Law
The Confidentiality of Health Care
Communications and Information Act
permits release or transfer of confidential
health care information without consent
“between and among qualified personnel
and health care providers within the
health care system for purposes of
coordination of health care services….”
KIDSNET KIDSNET
Funding / Sustainability
Robert Wood Johnson Foundation - initial grant
for immunization registry “plus”
Categorical development is typically CDC or
HRSA grant
HRSA Title V Block Grant and State System
Development Initiative (SSDI)
State restricted receipt accounts (newborn
screening, immunization)
Better funded programs pay for maintenance
and improvements that benefit all programs
Sharing
Each state is unique
We are all in this together
Learning from each other – happy to share
(VT, Texas, Orange County CA, Maine)
Questions?
Ellen Amore
KIDSNET Manager
401.222.4601
www.health.ri.gov