Maximizing the use of national survey data: The Data Resource Center for Child and Adolescent Health

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Maximizing the use of national survey data The
Data Resource Center for Child and Adolescent
Healthwww.childhealthdata.org

• Presented by
• Christina Bethell, PhD, MBA, MPH
• Your Data.Your Story!
• What did you learn about child health today?

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Presentation Overview

• Review the goals and functions of the DRC
• Online demonstration of the Data Resource Center
  on Child and Adolescent Health (www.childhealthdat
  a.org)
• Illustrate applications of the DRC and answer
  questions

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Who Developed and Sponsors the Data Resource
Center?

• Developed and led by The Child and Adolescent
  Health Measurement Initiative based at the Oregon
  Health and Science University
• previously with The Foundation for
  Accountability, which is now closed
• National advisory group provides ongoing guidance
  and approves of development of standardized
  indicators
• Sponsored by the federal Maternal and Child
  Health Bureau

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Goals for the Data Resource Center

• Provide a high-quality, publicly accessible and
  easy to use web-based resource that allows for
  tailored and interactive state and population
  subgroup level data searches
• Eliminate barriers faced by policy, program,
  provider, and advocacy audiences in obtaining
  information in a real time and user-friendly
  manner
• Advance evidence-based policy, program
  development, and advocacy on behalf of children,
  youth and families
• Build data literacy and the valid use of child
  health indicators
• Promote integration in the development of
  national surveys and excellence in the
  construction and interpretation of child health
  indicators

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Application of the DRC

• Identifying/documenting needs
• How many children in your state have what needs?
• How do needs vary across states and why?
• How do needs vary across subgroups of children
  within and across states and why?
• How does data support your assumptions or what
  youre hearing from the field (providers,
  families, other agencies)?
• Building partnerships
• What partners could use this data Public
  Programs, Health plans, Hospitals, Providers,
  community groups, faith based organizations?
• How can you share data to support common efforts,
  improve care?

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Application of the DRC

• Educating Policymakers
• What are key policy issues for your initiative ?
• What programs or groups need what information?
• What data could help them learn about child
  health needs?
• Advocacy
• Are there key pressure points in program budgets
  or priorities coming up?
• What methods would be most effective in
  presenting your case?
• How could you use data in Fact Sheets, Testimony,
  the media, along with family stories?
• Grant Writing
• How can you use data to strengthen your proposal?

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What features are available?

• Learn about the surveys
• Search and compare national, state, and regional
  survey results and over 100 child indicators for
  subgroups of children (age, race, sex, income,
  insurance and health status, etc.)
• Get resources and ideas on how to report your
  findings in a valid and effective manner
• Get expert help by e-mailing us your questions,
  plus get links to other data sets and resources

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What other features are available?

• Download cleaned, labeled state-specific national
  survey datasets with pre-constructed indicators
  and additional variables (SAS SPSS)one state
  dataset per state free.
• Sign up for regular e-updates and e-facts
• Find out about and access the latest
  publications, reports abstracts using the
  national survey data

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Data Search RECIPE
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Two surveys what do they have in common?

• Sponsored by the Maternal and Child Health Bureau
• Use SLAITS (State Local Area Integrated
  Telephone Survey) sampling mechanism
• National Center for Health Statistics of the CDC
  oversees sampling and administration
• Designed and collected in a manner that allows
  state to state and national comparisons
• Weighted data yield prevalence estimates for
  non-institutionalized child population ages 0-17

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National Survey of CSHCN
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In-depth CSHCN interview collects information on

• Child health and functional status
• Child health insurance status and adequacy of
  coverage
• Access to health care including amounts and
  types of health care services used by child and
  any unmet needs for services
• Care coordination
• Family-centeredness of childs health care
• Impact of childs health on family

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National Survey of Childrens Health

• Conducted for the first time during 2003 2004
• One child randomly selected in each household as
  subject of survey for a total of 102,353
  interviews
• Uses same CSHCN screening method as NS-CSHCN
• Information about childrens health and
  well-being collected in combination with data on
  childs family/neighborhood context
• First time such a broad range of info collected
  in manner that allow state-to-state and national
  comparisons

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NSCH Survey Domains
Child Characteristics
Family Level Influences
Child Outcomes
Neighborhood and Community Influences
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Unique Features of the NSCH

• Comprehensive detailed snapshot
• Child family neighborhood
• Contains a variety of positive indicators to
  track youth development
• family strengths
• family relationships and behavior
• family processes
• household routines

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The NSCH yields over 60 key indicators of child
health well-being in the following areas

• Childs health status physical, emotional,
  dental
• Childs health care including medical home
• Childs school activities
• Childs family including maternal health status
• Child Familys neighborhood

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NSCH Domains and Indicators
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Online DRC Tour
www.childhealthdata.org www.nschdata.org www.cshcn
data.org
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The Rules for Using Data Well

• Select data facts that
• Support your goal
• Are persuasive and resonate with audience
• Are believable
• Make social sense
• Overcome barriers or skepticism

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The Rules for Using Data Well

• Effective strategies
• Find positive stats to show progress
• Use personal stories to illustrate data
• Be consistent !!!
• Less is often MORE

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The Rules for Using Data Well

• Make social sense
• There are more gun shops than McDonalds in
  California
• Find positive stats to show progress
• Title IX was so successful that it increased
  young womens participation in high school sports
  by 847 percent.

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What is the knowledge base of your audience?

• 3 Scenarios
• Doesnt know (clarifying stats)
• Knows but doesnt care (linking stats)
• Knows but doesnt believe (stats from credible
  source)

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REMEMBER...

• At the end of the day, people change or support
  change for emotional reasons. Data helps them
  then rationalize their decisions.
• Kristin Grimm, Spitfire Strategies

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WA State Example

• How does caring for CYSHCN, especially those
  whose health needs are more complex, affect the
  work life of employed family members?
• 5 pieces of information from data collected
  with 2001 Nat Survey of CSHCN can help answer
  this question.

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What we need from the data

• How many CYSHCN live in WA State?

• About 210,000 CYSHCN ages 0-17

• How many of these CYSHCN had 1 or more family
  members cut down on hours worked to care for
  childs health needs?

• 25.7 of CYSHCN had 1 or more family members who
  cut back work hours to care for childs needs

• 95 CI for the 25.7 estimate is 21.9 - 29.4
  which translates into 46,000 to 62,000 CYSHCN in
  WA State w/ 1 or more family members who cut back
  on work hours to care for childs health needs

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What we need from the data

• How do parents in WA State rate the severity of
  their CYSHCNs health conditions?

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• Mild (0 2) 27.2
• Moderate (3 6) 51.6
• Severe / Most Severe (7 10) 21.2

(4.1)
(17.1)
21.2
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What we need from the data

• In WA State, are CYSHCN w/ complex conditions
  more likely to have family members who cut back
  on work hours to care for childs health needs?

How much more likely?
44 / 25.7 1.7xs
48 / 25.7 1.8xs
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What we need from the data

• Of those CYSHCN in WA with family members who cut
  back on work hours because of childs health
  needs, what percentage are CYSHCN whose health
  conditions are rated as severe or very severe?

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20,010 / 52,784 38 of CYSHCN whose family
members cut back work hours have conditions
rated as severe/most severe
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The Data Resource Center is ready and willing to
help!

•  
• To Get Help
• Go to Ask a Question on the www.childhealthdata
  .org, www.cshcndata.org or www.nschdata.org
  websites
•