Step 2: Identify Existing Data and Obtain Data Results
Key Activities
- Appoint the Data Subcommittee
- Identify existing data sources using the M&M data matrix
- Develop procedures to obtain data results based on the identified data sources
Activity 1: Appoint the Data Subcommittee
The State Leadership Team appoints a Data Subcommittee consisting of agencies representing the key service stakeholders from Step 1. The Subcommittee's purpose is to identify data sources and obtain actual results. Responsibility of tasks will be assigned to Subcommittee members with subsequent reporting at monthly review meetings. Meeting minutes will be recorded for aid in this process.
Agenda
A sample agenda for an initial Subcommittee meeting is available to download as a Word Document (10K) and is provided below for review.
Sample Agenda for Initial Subcommittee MeetingStep 2: Identify Data Sources and Obtain Data ResultsDate: Location: Attendees: Review past minutes:Meeting Purpose:Begin the process of understanding existing data pertaining to the M&M indicators for the CSHCN outcomes. Agenda:
Outcome for the meeting:
Next steps:
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Activity 2: Identify existing data sources using the M&M data matrix.
Assembling the Data Matrix
At the monthly meeting, the M&M Data Subcommittee develops procedures to identify data sources and determine which Subcommittee member will commit to bring data results to the next month's meeting. A data matrix table is the primary tool used by the State Leadership Team to collect information about these sources. As more sources are entered, the data matrix becomes a repository of specific information about each data source, the target population for the data, how frequently the data are collected, and the format in which the data are available for analysis (e.g., paper or electronic files).
A sample data matrix to use in collecting information about data sources is available to download as a Word Document (10K).
| Indicators for Outcome #3: Families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need. | Data source. Identify specific wording/item number. | Target Population | Frequency of Data Collection | Data Results |
|---|---|---|---|---|
1. % of CSHCN with insurance that covers costs of needed services, including:
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Title V NPM #11: % CSHCN in the State CSHCN Program with a source of insurance for primary and specialty care. Title V NPM #12: % of children without health insurance. |
Title V NPM #11: Combined data for CSHNP, PDSP, Healthy Start, considered Health Status Survey data. Title V NPM #12 Data from State Health Survey (population -based telephone survey) from the Office of Health Status Monitoring. |
Annual Annual |
95-96% have insurance
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States should find that through this process they are able to identify new data sources including, but not limited to the Consumer Assessment of Health Plans (CAHPS) data, school system transition data, Head Start data regarding screening and medical home, and survey data from the Developmental Disabilities program. States can also gather useful data on many of the measures by focusing on a number of national and state survey instruments. These surveys can be particularly helpful in measuring the outcomes for the broader population of children with special health care needs, going beyond those enrolled in state CSHCN programs. The following list highlights surveys that either directly provide state-specific data pertinent to the core outcomes or that have potential to guide the development of other measurement strategies.
Survey Tools for Monitoring CSHCN Outcomes
The National Survey of CSHCN: The Maternal and Child Health Bureau (MCHB), in collaboration with the National Center for Health Statistics at the Centers for Disease Control and Prevention (CDC), has sponsored the National Survey of CSHCN. The survey is being incorporated into the State and Local Area Integrated Telephone Survey (SLAITS), providing states with a prevalence rate for the broadly defined population of children with special health care needs. The survey provides states with valuable information related to many CSHCN core measures and indicators. Specifically, the survey contains questions pertaining to several of the core measures including medical home, adequacy of insurance, and access to services, as well as family satisfaction and participation in decision making. MCHB plans to repeat this survey every four years with 2004 being the most recent survey. Further information about the survey and results are available at http://www.cdc.gov/nchs/about/major/slaits/cshcn.htm
National Health Interview Survey-Disabilities (NHIS-D): This telephone survey is conducted by the National Center for Health Statistics (NCHS), providing information regarding a randomized sample of children and adults with developmental disabilities, specific health conditions, behavior problems, sensory loss, or physical disabilities. The survey contains questions related to medical home, transition, screening, and access to community-based services. Although data are provided at a regional level, some states have "purchased" additional data collection to acquire state-level data. Questions from the surveys can be used by states as a model in the development of their own surveys. Use of the same questions provides an opportunity for comparing state results to those at a national or regional level.
Medical Expenditure Panel Survey (MEPS): This survey uses a nationally-representative subsample drawn from households that participated in the prior year's National Health Interview Survey. MEPS provides information related to medical home, adequacy of insurance, and access to services. MEPS also provides children's health status information, such as prevalence of disabilities and time missed from work to care for sick children. MEPS targets persons with mental retardation, developmental disabilities, attention deficit disorder/hyperactivity disorder, specific physical and mental health, autism, hearing, vision, mobility, prescription medication, and behavior problems.
Pregnancy Risk Assessment Monitoring System (PRAMS): This mailed survey was developed by the CDC and Prevention for use by individual states. PRAMS is administered annually to a sample of women who were pregnant during that calendar year. The survey is designed to obtain information that could be used to identify the percentage of children who may be at risk for developing special health care needs, such as those whose mothers used cigarettes or alcohol. Additionally, this survey provides data related to receipt of early and continuous screening, receipt of prenatal care, insurance coverage for the child, and source of well-child checks.
Behavioral Risk Factor Surveillance System (BRFSS): This survey, conducted through the CDC, provides annual state-level data based on a randomized sample of the general adult population. Information is gathered regarding usual source of health care, insurance coverage, and employment status; this can be particularly useful in measuring indicators related to successful transition to adult health care. Additionally, a number of states have added questions to this survey to obtain data on particular health conditions (such as asthma, diabetes, and depression) as Use of National and State-wide Surveys to Measure and Monitor CSHCN Core measures well as obtain more comprehensive information on health care costs and barriers. Potentially, states could use this survey to identify a broader population of adults with special health care needs and add questions regarding the Healthy People 2010 core measures.
Consumer Assessment of Health Plans Child Survey (CAHPS): This tool is part of Health Plan Employer Data Information Set (HEDIS) and collects information on consumer satisfaction with health services as well as barriers to health care, such as getting appointments in a timely manner and communicating with health care providers. Findings are used to inform consumers about the quality of health plans to help them in selecting a health plan to meet their needs. The survey can be administered either via mail or telephone. Many state Medicaid programs gather CAHPS data, with data collection frequency can be determined by the survey purchaser. An exciting new addition to the CAHPS Child version is the incorporation of questions to identify the broader population of children with special health care needs, providing states with a valuable data source related to the CSHCN performance measures.
State-Designed Broad-based Surveys: Recently, Utah and Arizona each conducted statewide surveys to gain more comprehensive information related to the six CSHCN performance measures as well as state-specific priorities. Conducting their own surveys provided Utah and Arizona with the opportunity to gather data on a larger number of children with special health care needs that fit the broad CSHCN definition. Their surveys also offered the opportunity to include questions about screening and transition to adulthood, complementing the information they will be receiving through the SLAITS National CSHCN Survey.
Activity 3: Develop Procedures to Obtain Data Results Based on the Identified Data Sources
Subsequent Data Subcommittee meetings are intended to review actual results from specified/identified data sources for measuring the M&M indicators.
Agenda
A sample agenda for a Data Subcommittee meeting to review data resources is available to download as a Word Document (10K) and is provided below for review.
Sample Agenda for Data Subcommittee Meeting to Review Data ResourcesStep 2: Identify Existing Data and Obtain Data ResultsDate: Time: Location: Attendees: Meeting Purpose:
Agenda:
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The breadth of the data sources identified depends on the "buy-in" from needed partners and their willingness to share. Once existing data sources are identified, useful data must be gathered from those sources. State Leadership Teams may encounter some challenges to their data collection efforts, but they should remain focused on working with agencies to accomplish their goals.
Data Matrix
A Data Matrix for states to use in completing Step 2 for each of the six outcomes is available to download as a Word Document (10K)
States should find that they identify new data sources through this process.
Lessons Learned from M&M Partner States Regarding Data Availability
Over the 5 years of the M&M Project, it was evident that some indicators are easier to measure than others. Data Subcommittees from all the M&M states obtained actual data results from a wide array of sources both within and outside of the CSHCN program. Most of the data results were survey data from sources such as CSHCN client surveys, randomized household health surveys, CAHPS, Family Voices "Your Voice Counts," etc. Data related to transition came from the Department of Education and Medical Home project surveys. Data results are now available from the National Survey on CSHCN as well.
Indicators Typically Measured
The 16 of the 28 indicators that states were typically able to measure via interagency data coordination are listed below.
Outcome #1: Families partner and are satisfied
1.1: % families reporting satisfaction with the quality of primary care, obtaining referrals, needed services, coordination among providers.
1.2: % of parents who report satisfaction with their level of involvement in setting concerns/priorities about their child's care.
Outcome #2: Medical home
2.1: % with a regular source of primary medical care through a primary care provider.
2.2: % whose regular source of primary medical care communicates in a way that is clear and understandable to the family.
2.3: % of parents whose regular source of primary medical care identifies, discusses, and addresses the comprehensive needs of their child and family.
2.5: % of parents who receive referrals and assistance from the regular source of primary medical care in accessing needed services.
Outcome #3: Adequate insurance
3.1: % with insurance to cover the costs of needed services.
3.2: Amount of out-of-pocket costs paid by families.
3.3: % who can choose providers of their choice.
3.4: % whose insurance provides timely approval for needed care, overall parent satisfaction, clear information about coverage, resources, and complaint procedures.
Outcome #4: Screening
4.1: % of infants whose mothers began prenatal screening in the first trimester of pregnancy.
4.2: % of infants and families being monitored for special health care needs and developmental delays.
Outcome #5: Services are organized
5.2: % of parents who report that they are able to access comprehensive services for their child and family.
5.3: % of parents who have specialty care available in their region of the state.
Outcome #6: Transition to adulthood
6.1: % of youth who have a transition plan by age 14 (typically available for children in Special Ed. only).
6.2: % of youth whose regular source of primary medical care facilitates the transition from pediatric to adult providers.
Indicators with Greater Challenge
In general, states were less prepared to supply data for the12 additional indicators listed below. (1) These tended to be indicators based on multiple data sources (i.e., metabolic screening, newborn hearing screening, Early Intervention developmental screening, EPSDT); or (2) they reflected the presence of greater levels of interagency collaboration within the current system, particularly at local levels (i.e., participation at state and local levels; interagency enrollment/eligibility process).
Outcome #1: Families partner and are satisfied
1.3: % of parents who know steps to take when they are not satisfied with services.
1.4: % of parents who are supported financially for their involvement in state and local activities.
1.5: % of parents who report that they are effective partners in policymaking at state and local levels.
Outcome #2: Medical home
2.4: % whose regular source of primary medical care ensures age-appropriate well-child checks, including vision, hearing, developmental, oral health, behavioral/mental health, newborn screening, immunizations.
Outcome #4: Screening
4.3: % of children receiving age-appropriate well-child checks, including vision, hearing, developmental, oral health, behavioral/mental health, metabolic, and EPSDT.
4.4: % of children receiving needed follow-up due to failed screening (most states are able to monitor follow up of newborn hearing screening).
Outcome #5: Services are organized
5.1: % of parents who have a coordinated service plan that involves all providers and a lead service coordinator who communicates with the family.
5.4: The degree to which the state service system has an enrollment/eligibility process that links families and their medical home with a wide variety of public and private services and resources.
5.5: The number of private/public partnerships to provide community-based, comprehensive medical services for CSHCN (data sharing, contracts, MOAs).
Outcome #6: Transition to adulthood
6.3: % of adult health care providers who are prepared to serve youth with SHCN.
6.4: % of youth who report satisfaction with the information and training they received to make informed decisions about their health care and other services.
6.5: % of youth who received desired services and supports by age 21, including post-secondary education, employment, health insurance, transportation, housing, personal care attendant, SSI, SSA-related work incentives (e.g., PASS, 1619 a & b).
Monitoring the Broader CSHCN Population
States continue to be challenged in the ability to monitor progress on using the broad definition of CSHCN: "those children who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required to children generally." Issues affecting state capacity to monitor and measure the progress for this broad CSHCN population are listed below.
- Household samples of samples of CSHCN provide the most accurate approximation of the children who fit the broad definition of CSHCN. Some states have collected data on a randomized sample of children fitting this definition based on state-designed health surveys. The National Survey of CSHCN provides a common denominator for across-state comparisons, although it will not provide information on every child with a special health need.
- Some states are able to monitor progress for the broadly defined CSHCN population served by Medicaid, but not necessarily for those with private insurance or on SCHIP.
- The relatively small sample size from some of these surveys makes it difficult t determine the needs of particular populations, such as children with asthma, cerebral palsy, Down syndrome, etc.
- CSHCN from diverse cultures tend to be underrepresented, making it difficult to apply survey data in judging the needs of all children.
- Some states are able to report on children served through their CSHCN clinics only.
- Some data sources were available one time only (i.e., Family Voices "Your Voice Counts" survey, or Utah's Child Health Survey).
This variability in samples makes it more challenging to compare data results across states. Many states are relying on the National Survey of CSHCN to provide the common metric for reporting and to conduct state-by-state comparisons. However, data on smaller populations can provide useful information to guide State's program improvement efforts. Therefore, M&M staff encouraged states to consider all their available data to complement the information to be obtained from the National Survey of CSHCN.
Step 2 Checklist: Identify Existing Data and Obtain Data Results
The Step 2 checklist is available to download as a Word Document (10K) and is provided below for review.
Appoint the Data Subcommittee
- Data Subcommittee consists of individuals from agencies representing the key service stakeholders from Step 1
Identify existing data sources using the M&M data matrix
- Identify the various partners who potentially collect data pertaining to the CSHCN outcomes.
- Determine the specific data source (i.e., survey, enrollment, encounter data)
- Identify the target population for the data.
Develop procedures to obtain data results based on the identified data sources
- Determine how frequently the data are collected.
- Determine the format by which the data are available for analysis (e.g., paper files, computerized system used).