Purpose
Maximizing the Use of the New National Data Sets
Providing Information on Children and Youth with
Special Health Care Needs
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Advance understanding and widespread and
valid use of the National Survey of Children
with Special Health Care Needs and the
National Survey of Children’s Health for
research, policy and advocacy purposes
Moderator: Christina Bethell, PhD, MBA, MPH
Oregon Health and Science University
The Child and Adolescent Health Measurement Initiative
Child Health Services Research Meeting
June 25 2005
Boston Massachusetts
Panel Presentations
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Stephen J. Blumberg, PhD
• Overview of the national data sets and issues to consider when
analyzing and comparing findings across these data
Debra Read, MPH
• Models, methods and findings for stratifying findings from
national data sets by subgroups of children and youth with
special health care needs
Virginia Sharp, M.A
• Methods, opportunities and limitations in evaluation national
data sets at a substate geographic level
Christina Bethell, PhD
• Overview of The Data Resource Center on Child and
Adolescent Health as a tool for easily accessing, analyzing
and learning about findings from the national data sets
CSHCN Screener
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CSHCN Screener
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Five item consequences-based, parent reported screening tool
that is not based on a condition check-list or ICD-9/10 diagnostic
codes
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Identifies children and youth who currently experience one or
more of five health or health need consequences due to an
ongoing health condition.
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Current use of RX meds for ongoing condition
Above routine use of medical, mental or other type of health
services for ongoing condition
Need or use specialized therapies for ongoing condition
Need or use treatment or counseling for an ongoing emotional,
developmental or behavioral health condition
Functional difficulties/problem doing things other children his/her
age can do due to ongoing condition
Developed to operationalize the federal MCHB definition of
CYSHCN
“Children with special health care needs are children who
have or are at 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 by children generally.”
CSHCN Screener
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Developed through an extensive survey design and item reduction
process and validation against administrative and medical chart
review data
Compared to 39 item QUICC and 16 item QUICC-R
Compared to Clinical Risk Groups (CRG) methodology
85% identified also qualified using CRG method and had a
recorded diagnosis using ICD-9/10 data. Those without a diagnosis
disproportionately represented by “emotional, behavioral or
developmental
While CYSHCN have many more than the five consequences
represented in the CSHCN Screener, all have at least one of the
five represented according to the MCHB definition
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The Data Resource Center
on Child and Adolescent
Health (DRC)
Presented by Christina Bethell,
Bethell, PhD
CoCo-Developers: Debra Read, Nora Wells,
Brooke Latzke,
Latzke, Dana Zive,
Zive, NCHS, National
Advisors, consultants and other staff
Funding Agency: The federal Maternal and
Child Health Bureau, HRSA
What is the Data
Resource Center?
A website that delivers:
– Hands-on, user-friendly access to national,
state and regional data from the 2001 NSCSHCN and the 2003 National Survey of
Children’s Health (NS-CH)
– Technical assistance by email/telephone and
online materials, such as examples of data use
by states and links to related websites
– Education -- thru “hot topic” e-updates & inperson, telephone, and online workshops
www.childhealthdata.org
D ata Resource Center for
Child & Adolescent Health
www.cshcndata.org
www.nschdata.org
Nat. Survey of
Children w/ Special Health
Care Needs
HOMEPAGE
Nat. Survey of
Children’s Health
HOMEPAGE
Motivation for
Developing the DRC
•The importance of information on child and youth health and health
care quality is widely acknowledged.
•In recent years, with the leadership of federal agencies such as the
Maternal and Child Health Bureau, previously unavailable national,
state, and regional level data on child and youth health, health services
need and use, and health care quality has been collected.
•This information is particularly relevant to state and federal
policymakers as well as health care providers and family and
community leaders—many of whom lack the resources or skills to
easily access this data.
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Goals for Developing
the DRC
The free, web-based, publicly accessible Data Resource
Center on Child and Adolescent Health was developed to
Family Voices Meeting, Oct 2002
Initial reaction to and feedback on draft data center concept, educational
materials & preliminary data query model by state CSHCN staff and family
leaders
Online Needs Assessment,
Nov 2002
•further advance evidence-based policy, program
development, and advocacy on behalf of children, youth
and families
Prototype 1.0,
Jan 2003
First test version of data
center Web site, educational
materials. features &
data query model
Pilot Testing of
Prototype 1.0,
Feb — Mar 2003
•eliminate barriers faced by policy, provider, and
advocacy audiences in obtaining information in a real
time and user-friendly manner
•build data literacy
On going development &
refinement of draft educational
materials and direct data query
model, Oct - Mar 2003
Online request for information from
states and families
(n = 70; 35 State Represented)
Key Informant Interviews
Dec — Feb 2003
Series of one hour semi-structured interviews
with state CSHCN Title V directors and family
leaders (n = 20)
Public input
process with
families and
states
Family Voices National
Conference workshop,
Feb 2003
Technical
Specifications, Dec 2002
Preliminary identification of key data
resource center features and summary of
technical specifications & costs for
building and maintaining a Web-based
data resource center.
(Task 4; Deliverable #3)
Expert interviews and
scan of existing “model”
Web sites,
Oct — Nov 2002
Prototype 2.0,
April 2003
Revised data
center prototype & educational
materials finalized
Identification of
prospective vendors;
procurement of technical
bids, Nov — Dec 2002
On line demo at Tri
Regional Title V
Conference , Feb 2003
(n = 60)
National AMCHP Meeting
presentation , Mar 2003
(Tasks 6 & 8)
Focus group with WA
state CSHCN program
staff & family leaders,
Mar 2003 (Tasks 6 & 8)
NSCH Survey questions address:
Data Resource Center Functions
• Child health & functional status
•Directly search for data from a set of standardized
measures about child, youth and family health, needs, and
health care quality
• Health insurance
• Interactively compare national, state, and regional survey
results by geographic area and socio-demographic groups
• Medical Home
• Learn to use data more effectively to assess needs and
performance as well as to check assumptions
• Early childhood (ages 0-5)
• Discover how other state and family leaders are using data
to inform and stimulate systems
development and change
• Get expert help via e-mail, telephone, or through a series
of in-person or online skills building workshops
• Health care access & utilization
• Middle childhood & adolescence (ages 6-17)
• Family functioning
• Parental health
• Neighborhood characteristics
Survey yields over 60 key indicators of child
health & well-being in the following areas:
• Child’s health status: physical, emotional, dental
• Child’s health care – including medical home
• Child’s school & activities
• Child’s family – including maternal health
status
NS-CSHCN Data Search Topics
1) Children with & without special health needs
2)
Households with & without CYSHCN
3)
CYSHCN population only
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Demographics (all children or all households)
5)
CYSHCN Health & functioning (Section 3)
6)
CYSHCN Access to services & unmet needs (Section 4)
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CYSHCN Health care experiences (Section 6)
8)
CYSHCN Insurance status (Section 7)
9)
CYSHCN Adequacy of insurance coverage (Section 8)
10) CYSHCN Impact on family (Section 9)
• Child & Family’s neighborhood
11) MCHB core outcomes for CYSHCN
12) State profile key indicators
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Data Resource Center Applications
Data Resource Center Applications
. Educating policymakers
Identifying/documenting needs
•What are key policy issues for your state or population of interest?
•How many children have what needs?
•How does data support what users are hearing from the field (providers, families, other
agencies)?
•What programs need what information?
•What data could help them learn about child health needs?
Advocacy
Building improvement partnerships
•What partners could use this data: public programs, health plans, hospitals, providers,
community groups, faith-based organizations?
•Using data to inform and focus efforts to improve care.
•Are there anticipated key pressure points in program budgets or priorities?
•What methods would be most effective in presenting your case?
•How could you use data in fact sheets, testimony, and the media, along with family
stories?
Grant Writing
•Using data to frame the need and design
STEP 1
Data Search
Recipe
Data Resource Center Status and
Future Development
Status of DRC Web Portals
www.cshcndata.org launched April 2004
(Approximately 105,000 hits prior to outreach and marketing.)
STEP 2
www.nschdata.org soft launch May 2005
(Over 82,000 hits – prior to hard launch or outreach and marketing.)
Future Development
•Starting in July 2005, the DRC will move into an outreach and marketing phase to motivate
and expand use of data by non-technical and other audiences.
•The DRC will be further developed on an ongoing basis and is expected to include data from
additional surveys over time.
STEP 3
•New features will include the capacity for sub-state geographic analyses, trending data
(when future years of data are included), querying multiple indicators at one time, and new
online workshops, resources, and examples for using data to stimulate systems change.
Using data to stimulate system
change
Data Resource Center
for the
National Survey of
Children’s Health and the
NS-CSHCN
Online Tour
The QUEST!
• Question: What is the actionable question?
• Understanding: What are the relevant variables,
measures and analyses to address the question?
• Efficiently and effectively analyze data
• Synthesize and summarize results in a relevant
manner for each audience
• Tell the story and take action!
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Visit soon!
• National Survey of Children with
Special Health Care Needs
www.cshcndata.org
• National Survey of Children’s Health
www.nschdata.org
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