Examples of Data Use

This webpage is dedicated to hosting compelling stories and examples of ways others are using data from the Data Resource Center to make a difference.

SHARE YOUR STORY! Do you have a story or example of data use you’d like to share? Email us at cahmi@ohsu.edu and share how you’ve used the NSCH or NS-CSHCN!

Featured Stories

It takes a Family: An Analysis of Family Participation in Policymaking for Public Programs Serving Children with Special Health Care Needs in California

This is a new report sponsored by the Lucile Packard Foundation, which takes a look at the current rules governing family participation in policymaking, and outlines recommendations for how California could better serve its children and families by including families and youth in the decision-making process. In addition to the full report, a two-page summary of its key points and recommendations is also available. 

Overcoming Adverse Childhood Experiences: Creating Hope for a Healthier Arizona 

The Phoenix Children's Hospital collaborated with the Maternal and Child Health Bureau (MCHB), the National Center for Health Statistics (NCHS) and we, the Data Resource Center (DRC) created a brief about the status of health for children who have experiences adverse childhood experiences (ACEs).  

Children with Special Health-Care Needs in North Dakota.

Using data from the 2009-2010 NS-CSHCN survey, this is the latest report designed to assist key stakeholders – policymakers, advocacy groups, community based organizations, and parents – in understanding the health and well-being of children with special health-care needs (CSHCN) in North Dakota.

Overview of Adverse Childhood and Family Experiences in North Dakota
The North Dakota department of health teamed up with the CAHMI to create this data-centered overview of adverse childhood and family experiences in North Dakota. Using data from the 2011/12 National Survey of Children’s Health, the North Dakota department of health examined the prevalence of adverse child and family experiences in their state modeled after the ACEs national data brief created by the Data Resource Center for Child and Adolescent Health.  

Children with Special Health Care Needs in California: A profile of Key Issues (2009/10): 
The CAHMI worked with the  Lucile Packard Foundation for Children’s Health (LPFCH) to create this comprehensive report on the health and well-being of the state’s children with special health care needs (CSHCN) population. This report features data from the 2009/10 NS-CSHCN and provides a profile of demographic characteristics, physical, mental, and social functioning, and health and community service needs of CSHCN in California. It is a companion piece and update to the 2010 report written in collaboration with LPFCH.

Using Data from the DRC to Teach Graduate  Students & Jumpstart MCH Careers
Russell Kirby, Professor and Merrell Endowed Chair at the University of South Florida College of Public Health, has used the Data Resource Center for Child and Adolescent Health to teach his second year master’s and doctoral students since 2009. In his Secondary Data Analysis for Maternal and Child Health class, Dr. Kirby works with his students through the research and analysis process focusing on a topic of their choice from the National Survey of Children's Health. The class culminates in a presentation and manuscript, which some students take to national conferences.

Children with Special Health Care Needs in California: A Profile of Key Issues and a Call to Action
The CAHMI created this comprehensive report for the Lucile Packard Foundation (LPF) on the health and well-being of the state’s estimated 1.4 million children with special health care needs (CSHCN). Features data from the 2007 NSCH and the 2005/06 NS-CSHCN and provides a profile of demographic characteristics, physical, mental, and social functioning, and health and community service needs of CSHCN in California.

North Dakota CSHCN Report
This report is designed to assist key stakeholders – policymakers, advocacy groups, community based organizations, and parents – in understanding the health and well-being of children with special health-care needs (CSHCN) in North Dakota. Prepared by the Child and Adolescent Health Measurement Initiative’s Data Resource Center for the North Dakota Department of Health, the report focuses on analysis of CSHCN survey results for the MCHB core outcomes and family impact indicators in North Dakota. In November of 2009 the report won an award for excellence in public health communication from the National Public Health Information Coalition.

Family Leaders

Massachusetts Mom Storms the State House
Carrie Howland a mother and family leader included data from the Data Resource Center in a presentation at the National Respite Coalition event in Washington DC, in support of the National Lifespan Respite Care Act. Read more here on Carrie's family, work, and download a copy of her presentation to the Massachusetts legislature in 2006, as well as her most recent testimony to Congress.

Family Voices Leader in North Dakota
Donene Feist, a parent activist, understands the power of data to support and strengthen the stories parents and caregivers have to tell about the challenges of caring for children with special needs. Read more here on Donene's work and download a copy of her presentation titled "Leaving No Child Behind".

State Users

2012 Louisiana Report Card on Physical Activity and Health for Children and Youth

The Pennington Biomedical Research Center's 2012 Louisiana Report Card on Physical Activity and Health for Children and Youth uses data from the 2007 NSCH to assess environmental and neighborhood factors affecting the health of Louisiana's children. This report, distributed to legislators, policy makers, teachers, health care professionals, researchers and parents, examines Louisiana's built environment in relation to children and adolescent health.

Children with Special Health Care Needs in CA: A Profile of Key Issues and a Call to Action
The CAHMI created this comprehensive report for the Lucile Packard Foundation (LPF) on the health and well-being of the state’s estimated 1.4 million children with special health care needs (CSHCN). Features data from the 2007 NSCH and the 2005/06 NS-CSHCN and provides a profile of demographic characteristics, physical, mental, and social functioning, and health and community service needs of CSHCN in California.

2011 California Report Card: Setting the Agenda for Children
This report uses select data from the 2007 NSCH and details the top ten high-priority, high-impact actions California’s policymakers should take to reverse the declining status of children.

Chart Book on the Health of Minnesota's Children
This online chartbook was compiled by State Health Access Data Center (SHADAC) to highlight how Minnesota is doing on a number of key indicators of child health. This report uses 2007 NSCH data.

2010 -- Burden of Oral Disease in Wisconsin
This report contains data from the 2007 NSCH on oral health among CSHCN in Wisconsin.

Colorado Health and Health Care: Medicaid Child Health
This report, produced by the Colorado Department of Health Care Policy and Financing, uses data from the 2007 NSCH to demonstrate the overall health of Colorado children on Medicaid.

The Health of Washington State Report uses the NS-CSHCN and NSCH
This Health of Washington State report used findings from the 2001 NS-CSHCN and 2003 NSCH in their chapter on children with special health care needs

Using the DRC to Influence Health Care Policy in Alaska
Barbara Hale has used the Data Resource Center to influence health care policy in the state of Alaska. Read more here on Barbara's work and download a copy of her presentation to "Alaska's Covering Kids Coalition" Meeting in October 2005.

The DRC helps Kids Count in Maine
The Maine Children's Alliance compiled this comprehensive report on the physical, social, economic, and educational well-being of Maine's children.

Maine influences policy with DRC data
A report created by Maine Children's Alliance to partner with the Maine Kids Count databook, to provide policymakers with the information they need to improve mental health outcomes for Maine's children.

Outcomes by Income: Low-income children fare worse on many indicators
Action for Children in North Carolina used data in their publication “Outcomes by Income: Low-income children fare worse on many indicators” to examine how children fare on indicators of health, early care and education by income.

Minnesota’s Title V Supervisor uses the DRC to develop Needs Assessment Fact Sheets
Sarah Thorson, Supervisor of Minnesota’s Title V uses data from the DRC to develop fact sheets for the 5 year needs assessment required by the national Title V Maternal and Child Health Program. Read more here on Sarah's work and download a copy of her Needs Assessment Fact Sheets.

Implementing the Medical Home Model in Minnesota: A Case Study
Implementing the Medical Home Model in Minnesota: A Case Study is the first in a series of maternal and child health (MCH) case studies designed for classroom use by teachers of public health, MCH, health policy, evaluation, and health education in preparing students to serve as effective change agents working within the framework of Title V at national, state, and community levels.

Report Briefs

AMCHP Issue Brief: The ACA and CY with ASD-DD, February 2012 This report by the Association of Maternal & Child Health Programs (AMCHP) examines the Affordable Care Act (AFA) and its impact on children with Autism Spectrum Disorders (ASD) and other Developmental Disabilities (DD). It uses data from the 2009/10 National Survey of Children with Special Health Care Needs to compare children with ASD/DD to other children with special health care needs on several key health and system performance measures. 

Pediatric Medical Homes: Laying the Foundation of a Promising Model of Care, October 2011
This report by the National Center for Children in Poverty describes the medical home concept and explains how it has been defined, applied to children, and measured. It uses data from the 2007 National Survey of Children's Health to report on the number and characteristics of American children served by medical homes. It also discusses opportunities to leverage medical homes to improve medical care and achieve better health outcomes for young children, with a particular focus on the coordination of care for vulnerable children.

Why Not the Best? Results from the National Scorecard on U.S. Health System Performance, 2011
The Commonwealth Fund's report asses the extent to which U.S. health system performance has improved over time to provide benchmarks of health systems performance and to estimate the effects of new health care policies (e.g. the Affordable Care and Patient Protection Act) on health system performance. They included several indicators developed by CAHMI from the National Survey of Children's Health.

National Parent Profile
The Child & Adolescent Health Measurement Initiative (CAHMI) staff produced a 2-page report brief using data on parenting and family life from the 2007 National Survey of Children's Health.

Securing a Healthy Future: The Commonwealth Fund State Scorecard on Child Health System Performance, 2011
The Commonwealth Fund produced a report assessing states’ performance on health care relative to achievable benchmarks for 20 indicators of children's access, quality, costs, and health outcomes. They included several data points from the 2007 National Survey of Children's Health.

Health Care Transition for Youth with Special Health Care Needs: An Analysis of National and State Performance
Got Transition? The National Health Care Transition Center prepared a report on youth with special health care needs in the US who receive the services necessary to sucessfully transition to adult care. They used data from the 2005/06 National Survey of Children with Special Health Care Needs to examine state and demographic variations in performance on this measure.

Early Warning! Why Reading by the End of Third Grade Matters
This KIDS COUNT Special Report from the Anne E. Casey Foundation uses data from the 2007 NSCH on families reading to young children and school-age children repeating one or more grades in school.

2009 Profiles of Latino Health
The National Council of La Raza (NCLR) answers one of twelve questions about Latinos and health care in this two-page fact sheet: "Which health care services do Latinos have trouble obtaining?". Data from the 2003 National Survey of Children's Health are included.

HPV Vaccine Update and Impact of Reported Adverse Effects
This brief on the HPV vaccine (page 4 through 7) is embedded in CityMatch's "City Lights" newsletter and contains data from the 2007 National Survey of Children's Health.

The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State Policymakers
A new report developed in January 2011 by the National Academy for State Health Policy (NASHP) for the Catalyst Center reviews and analyzes key provisions of the Affordable Care Act (ACA) relevant for CSHCN to help inform state policymakers’ decisions.

Children and Youth With Special Health Care Needs (CYSHCN) in Alaska
The Alaska Division of Public Health's Section of Women's Children's and Family Health uses data from the 2007 National Survey of Children's Health and the 2005/2006 National Survey of Children with Special Health Care Needs to create this Title V Needs Assessment report brief for their state.

Kansas Health Institute
The Kansas Health Institute produced a series of publications related to the health of children in Kansas using the 2003 National Survey of Children's Health.

A Family View of Children’s Health in Hawai‘i: Children With and Without Special Health Care Needs, 2003
The Children with Special Needs Branch of the Hawaii Department of Health created a report comparing CSHCN and non-CSHCN populations from the 2003 National Survey of Children's Health.

Health Care Access and Utilization: Adolescents and Young Adults (NAHIC)
The National Adolescent Health Information Center (NAHIC) used data from the DRC in a report on health care access and utilization for adolescents and young adults.

Colorado Health Report Card: Vigorous Exercise
This report is part of the Colorado Health Foundation's "2007 Colorado Health Report Card" looks at physical activity and medical home in healthy children in Colorado.

Making the Case for Addressing Adolescent Health Care
A second fact sheet by Margaret McManus and Harriette Fox of Incenter strategies documents the compelling needs of our nation's adolescents and the current status of these needs through our system of health care financing and delivery.

Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health
The National Academies of Science used data from the National Survey of Children’s Health in a report that offers a new framework for the health measurement of children.

AMCHP Health Care Reform Fact Sheet: What’s in it for Children and Youth with Special Health Care Needs?
The Association of Maternal and Child Health Programs (AMCHP) released a summary fact sheet in October 2010 to help state maternal and child health (MCH) programs understand and implement key provisions of the Patient Protection and Affordable Care Act (ACA)

Children with Down Syndrome: Families Are More Likely to Receive Resources at Time of Diagnosis Than in Early Childhood
This report from the U.S. Government Accountability Office (GAO) is based on an analysis of fee-for-service claims data and Medicaid claims data, interviews with specialists and advocacy groups, and an analysis of data from the 2005/06 NS-CSHCN on barriers to accessing needed services.

Prevalence of CSHCN in Milwaukee, WI: Using the Milwaukee MSA
This article, published in the Wisconsin Journal of Medicine, demonstrates using an interelated survey approach to determine level of need and prevalence of CSHCN in the city of Milwaukee.

Quality Care for Special Kids
This report brief by Mathematica Policy Research profiles children with chronic conditions and disabilities using the 2001 NS-CSHCN, addressing the issues of treating emotional and behavioral disorders in children and adolescents.

Family Opportunity Act in Oregon
The Oregon Developmental Disabilities Coalition used data from the DRC to write a Fact Sheet on expanding access to healthcare for children and their families. The Fact Sheet was provided to state legislators by family advocates.

Medicaid Waver for CSHCN
The Oregon Developmental Disabilities Coalition used data from the DRC to write a Fact Sheet for state legislators to encourage support of a Medicaid waiver for medically involved children. The one page document provides a quick overview that clearly outlines facts and how proposed legislation will benefit children and their families.

Save the CDRC
Dr. Brian Rogers used state-by-state comparisons from the National Survey of Children with Special Health Care Needs in his preparation for a legislative hearing on proposed budget cuts to the Child Development and Rehabilitation Center (CDRC).

Adolescent Health Care Access
Margaret McManus and Harriette Fox of Incenter Strategies share their experiences with technical assistance at the DRC. Margaret and Harriette wrote a report brief based on data from the National Health Interview Survey and the National Survey of Children's Health, this fact sheet examines the relationship of race and ethnicity for a set of 12 indicators. Read more here about the work at Incenter Strategies and to download a copy of the report brief “Racial and Ethnic Disparities in Adolescent Health and Access to Care”.