from data to action: developing & disseminating key indicators from the 2003 national survey of...
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From data to From data to actionaction::Developing & disseminating key Developing & disseminating key
indicators from the 2003 National indicators from the 2003 National Survey of Children’s HealthSurvey of Children’s Health
Centers for Disease Control and Prevention National Center for Health Statistics
Kathleen S. O’ConnorKathleen S. O’ConnorChristina D. BethellChristina D. Bethell
Stephen J. BlumbergStephen J. Blumberg
June 27, 2007June 27, 2007Inaugural Conference of the Inaugural Conference of the
International Society for International Society for Child Health IndicatorsChild Health Indicators
Chicago, IL - June 26 - 28, 2007Chicago, IL - June 26 - 28, 2007
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Overview
(Selected) efforts to publish child health indicators General (selected) measurement issues to consider The 2003 National Survey of Children’s Health
(NSCH) model for key indicator development & dissemination Survey methods Expert panel review Indicator development & decision-making Indicator dissemination
Data Resource Center (DRC) on Child and Adolescent Health (www.childhealthdata.org)
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(Selected) efforts to publish child health & well-being indicators
Kids Count ChildTrends Data Bank Index of Child & Youth Well-Being National Longitudinal Study of Adolescent
Health Youth Risk Behavior Surveillance System American Community Survey National Survey of America’s Families
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Measurement issues
Increasing demand for child health and well-being data, especially at the sub-national level
Lack of data: states & local areas Small cell sizes: limited utility for subgroup
analyses depending on research question When comparing the “same” child health
indicator from more than one survey: must compare question wording, construct definition, data collection date, length of referent period, et cetera
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Measurement issues (2)
If examining trend data: If estimates from two iterations of the same
survey vary, has the population itself changed over time? Or could it be due to (for example) minor changes in question wording? What if this has policy implications?
Should these data be ‘standardized’ before running trend analyses?
Are two data points a ‘trend’ or a ‘comparison’? Do data users want this much detail - will a non-
researcher care?
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Measurement issues (3)*(*adapted in part from McGlynn, Health Affairs 1997 16: 7-21).
Various stakeholders may perceive a key health concept differently (examples: definitions of disability, health care quality)
Challenges: Identify & balance differing perspectives among
stakeholders Define accountability & framework Establish judgment criteria Identify reporting requirements Develop information systems to support
reporting requirements
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NSCH, 2003 Goal:
produce uniform, comparable national & state estimates on health & well-being for children, families & communities
Sponsor: Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB)
Conducted by: CDC’s National Center for Health Statistics (NCHS), State and Local Area Integrated Telephone Survey (SLAITS) Sampling frame of the National Immunization Survey (NIS) Gain in efficiency, reduced survey cost
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NSCH, 2003
Survey yields over 100 indicators of child health & well-being in the following areas::
Child’s HEALTH STATUS - physical, emotional, dental, CSHCN Screener
Child’s HEALTH CARE – including medical home
Child’s SCHOOL & ACTIVITIES Child’s FAMILY – including maternal health status
Child & Family’s NEIGHBORHOOD
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NSCH, 2003
Currently the largest representative national survey of health, well-being, & healthcare of youth < 18 years old at the national & state levels
Data collection repeated 2007 Parent/guardian respondent, household
(HH) survey N = 102,353 (~2,000 per state & DC) Microdata publicly released in 2005
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Sample design
Broad cross-sectional multistage sampling design
Random-digit-dial (RDD) telephone survey of HH (screened ~1.9 million telephone lines to identify eligible HH)
One child in HH randomly selected Sampling weights adjusted for non-response
& non-coverage Weights permit national and state-level
estimation
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Data utility: NSCH Multiple stakeholders
Title V MCHB performance objectives or ‘core outcomes’ for the general pediatric population; program evaluation
Main data source for a number of indicators re: the Title V block grant application & state MCH funding (
Researchers Policymakers Journalists
Interested in new data & trends Asks ‘How does this compare with __’ to gain an angle & perspective
Parents & advocates for children Ask ‘why’?, want to know practical uses of data Could support parental decision-making Provide consumers with basic information to understand & use health
care (access, utilization, etc.)
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Use of expert panels: key indicator development, 2003 NSCH
Two expert panels convened by HRSA: National Expert Panel (NEP) Technical Expert Panel (TEP)
Third panel: Data Resource Center Advisory group (to be discussed)
NEP: identified key constructs that should be considered for inclusion
TEP: provided guidance on instrument & survey design
TEP = subset of NEP
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Expert panels (2)
Provided guidance Reviewed instrument drafts Developed strategies & criteria to evaluate
proposed methods & questions Provided connections to relevant research;
identified gaps in knowledge Advanced progress of the survey design
process Represented broad-based, meaningful
constituency involvement
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Expert panels (3)
Range of specialties: practitioners, researchers, survey methodologists, parent advocates, pediatricians, Federal staff from two agencies
Successfully achieved wide representation of collective perspectives & experiences
Breadth & depth of competence that matched evaluative objectives (i.e., key indicators to be developed)
Highly collaborative & collegial process
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Expert panels (4)
Process fulfilled Federal need to manage agency research, evaluation & dissemination efforts to improve pediatric health care for all children
Dimensions:
timing: NEP mostly involved in early & very end stages; TEP highly involved throughout
involvement: TEP offered numerous structured & unstructured opportunities for input (FTF, conf calls; NEP primarily FTF)
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Expert panels (5)
TEP offered prioritized recommendations for sponsor decisions
Final decisions rested with HRSA/MCHB Dimensions
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Indicator dissemination
Four chartbooks published by HRSA/MCHB with national & state-level indicators for youth & families General health, well-being Overweight Rural health Oral health
Special edition of Pediatrics solely dedicated to NSCH findings
Volume of manuscripts & posters indicate high level of knowledge production
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““Build it and they will come…”Build it and they will come…”
Developed and led by CAHMI -- Child and Adolescent Health Measurement Initiative based at the Oregon Health & Science University in Portland OR
•A third group of experts (National Advisory Group) provides ongoing guidance & approves of development of standardized indicators (some overlap of personnel with TEP)
Sponsored by HRSA/MCHB
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www.childhealthdata.org
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Data Resource Center on Child & Data Resource Center on Child & Adolescent Health (DRC) Adolescent Health (DRC)
• Hands-on, centralized, user-friendly access to data
National Survey of Children with Special Health Care Needs (NS-CSHCN)
National Survey of Children’s Health (NSCH)
• Resources & information about data Examples of how other state & family leaders use
these findings, background about the national surveys, resources about health of children
InteractiveInteractive data resource centerdata resource center
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Available data output
Multiple indicator state profile tables Single indicator “all states” comparison tables Data graphs and tables for every indicator
Comparing an indicator across any two geographic areas and
Comparing indicators across subgroups of children by age, race, insurance status, income, family structure, health status, etc.
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Education “Real time” technical assistance to understand,
interpret & use data Online workshops Opportunities to partner with other stakeholders to
discuss, interpret & act on findings
DRCDRC
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Educate policymakersEducate policymakers Key policy issues for your state Programs needs for information Child health needs
AdvocacyAdvocacy Pressure points in program budgets, priorities Effective methods to present a case Use of data in Fact Sheets, testimony, the media,
to strengthen family stories
Grant writingGrant writing Use of data to strengthen proposal
DRC useDRC use
Kristin Grimm, Spitfire Strategies
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DRC website DRC website www.childhealthdata.org
umbrella site for national SLAITS survey dataumbrella site for national SLAITS survey data
Nat. Survey of Children’s Health
HOMEPAGE
www.nschdata.org
Data Resource Center for Child & Adolescent Health
www.childhealthdata.org
Nat. Survey of Children w/ Special Health
Care NeedsHOMEPAGE
www.cshcndata.org
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Example of multiple indicator state profileExample of multiple indicator state profile
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Example of single indicator “all state” comparison table (option to sort by rank)
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Example of single indicator data table comparing two geographic areas
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Example of single indicator graph comparing two geographic areas
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Example of single indicator graph comparing two geographic areas and three subgroups of children (by type of health insurance)
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Examples of available informationExamples of available information
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SELECT
● GEOGRAPHIC AREA
● TOPIC to search
SELECT
● QUESTION within topic area
COMPARE SUBGROUPS
to view question results by age, gender, race, type of special
need, etc.
Data Search“RECIPE”
STEP 1
STEP 2
STEP 3
COMPARE results with other
STATES
OPTIONAL
COMPARE results with other
STATES
OPTIONAL
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How “Action for Children North Carolina” used data from the DRC
1. Basis for an issue brief Outcomes by Income: low-income children fare worse on
many indicators2. Strengthen relationships with media
Sent the findings out to North Carolina’s Hispanic news outlets and others
Putting data into actionPutting data into action
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Data from the DRC allowed AFC to look at health, early care & education outcomes for children by income
•First time AFC could do this for a large number of indicators•Good opportunity to provide recent comparable findings on health insurance & child care subsidies
Basis for an issue brief
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Strengthen relationships with local mediaStrengthen relationships with local media
AFC is now the ‘go-to’ source for information about children in NC
Great source of data by race (a frequent media request)
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Other ways ACF used the data
Various presentations
Created a ‘Positive Indicators’ section in their biennial North Carolina Children’s Index report; variables included:
• read to daily by a family member• attends religious services• parent feels neighborhood is safe
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At the population level, this estimate translates into over 1 million children in Texas without health insurance of
any type at the time of the survey
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Click BLUE TEXT
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Take home messages
Significant investments (time, effort, money, et cetera) have been expended to collect these data
Valuable source of key child health & well-being, family & community indicators
The 2003 NSCH model demonstrates a successful indicator development & dissemination process that may be applicable to your situation
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Thanks!
Kathleen S. O’Connor, MPH [email protected]
CDC, NCHS [email protected]
Hyattsville, MD
Christina Bethell, PhD, MPH, MBA [email protected], the Child & Adolescent Health
Measurement Initiative (CAHMI)Portland, OR
Stephen Blumberg , Ph.D. [email protected]
CDC, NCHS [email protected]
Hyattsville, MD