Maximizing the Use of the New National Data Sets Providing Information on Children and Youth with Special Health Care Needs Moderator: Christina Bethell, PhD, MBA, MPH Oregon Health and Science University The Child and Adolescent Health Measurement Initiative Child Health Services Research Meeting June Boston Massachusetts

Purpose Advance understanding and widespread and valid use of the National Survey of Children with Special Health Care Needs and the National Survey of Childrens Health for research, policy and advocacy purposes

Panel Presentations 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 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 Five item consequences-based, parent reported screening tool that is not based on a condition check-list or ICD-9/10 diagnostic codes Identifies children and youth who currently experience one or more of five health or health need consequences due to an ongoing health condition. 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

CSHCN Screener 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

The Data Resource Center on Child and Adolescent Health (DRC) Presented by Christina Bethell, PhD Co-Developers: Debra Read, Nora Wells, Brooke Latzke, Dana 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 NS- CSHCN and the 2003 National Survey of Childrens Health (NS-CH) –Technical assistance by /telephone and online materials, such as examples of data use by states and links to related websites –Education -- thru hot topic e-updates & in- person, telephone, and online workshops

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 leadersmany of whom lack the resources or skills to easily access this data. Motivation for Developing the DRC

The free, web-based, publicly accessible Data Resource Center on Child and Adolescent Health was developed to eliminate barriers faced by policy, provider, and advocacy audiences in obtaining information in a real time and user-friendly manner build data literacy further advance evidence-based policy, program development, and advocacy on behalf of children, youth and families Goals for Developing the DRC

Directly search for data from a set of standardized measures about child, youth and family health, needs, and health care quality Interactively compare national, state, and regional survey results by geographic area and socio-demographic groups Learn to use data more effectively to assess needs and performance as well as to check assumptions Discover how other state and family leaders are using data to inform and stimulate systemsdevelopment and change Get expert help via , telephone, or through a series of in-person or online skills building workshops Data Resource Center Functions

NSCH Survey questions address: Child health & functional status Health insurance Health care access & utilization Medical Home Early childhood (ages 0-5) 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: Childs health status: physical, emotional, dental Childs health care – including medical home Childs school & activities Childs family – including maternal health status Child & Familys neighborhood

NS-CSHCN Data Search Topics 1) Children with & without special health needs 2) Households with & without CYSHCN 3) CYSHCN population only 4) Demographics (all children or all households) 5) CYSHCN Health & functioning (Section 3) 6) CYSHCN Access to services & unmet needs (Section 4) 7) 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) 11) MCHB core outcomes for CYSHCN 12) State profile key indicators

Data Resource Center Applications Identifying/documenting needs How many children have what needs? How does data support what users are hearing from the field (providers, families, other agencies)? 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.

Data Resource Center Applications. Educating policymakers What are key policy issues for your state or population of interest? What programs need what information? What data could help them learn about child health needs? Advocacy 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

Status of DRC Web Portals launched April 2004 (Approximately 105,000 hits prior to outreach and marketing.) 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. 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. Data Resource Center Status and Future Development

Data Search Recipe

Data Resource Center for the National Survey of Childrens Health and the NS-CSHCN Online Tour

Using data to stimulate system change The QUEST! Q uestion: What is the actionable question? U nderstanding: What are the relevant variables, measures and analyses to address the question? E fficiently and effectively analyze data S ynthesize and summarize results in a relevant manner for each audience T ell the story and take action!

Visit soon! National Survey of Children with Special Health Care Needs National Survey of Childrens Health