1. Partnering to Determine Common EHDI Data Items
Pam Costa, Roy Ing, Susanna Visser – CDC
Sherry Spence – Oregon
Members of the Data Committee

2. Background
Under the Walsh Bill, CDC is to support data management and research
To accomplish data comparison and multi-state research, important to have “common” items
CDC initiated the process in November 2001 to help states identify common items for tracking, population description, outcomes, and research

3. Surveillance System Data - Uses
Determine number/distribution of children with hearing loss
Provide baseline information
Provide data for health planning/evaluation
Detect changes in health practices
Education/research
Service delivery

4. Current Status
States are at different places in development of their EHDI systems
Most states can provide information on the number of children screened and referred, but not much more
States are looking to both federal agencies and other states for ideas and solutions

5. Current Challenges
Limited data available to describe population of children with hearing loss
Limited data currently available to describe EHDI system (DSHPSHWA)
Limited data to address growing research agenda
Need to move towards systematic data collection, including common variables, on infants who fail hearing screening, through the process of evaluation and diagnosis to included all children with hearing loss

6. Benefits of Common Data Items
Allow states to:
Speak the same language
Compare key variables across states
Aggregate data for more stable estimates
Define the population of interest
Facilitate data analysis

7. Framework Finagle’s three laws on information:
The information you have is not what you want
The information you want is not what you need
The information you need is not what you can (or have) obtain(ed)
J.H. Murnaghan

8. Process CDC identified preliminary listing of variables to discuss
CDC formed and supported the Data Committee and charged it with identifying common items
Committee has collaborated for nearly 18 months to identify data items

9. Where We are to Date List of potential data items available
Data items are being reviewed individually as well as in groups
States have identified 3 categories of variables: minimum, core, enhanced
States will ensure data items needed for tracking, to support program goals and objectives, to allow for program planning and evaluation, for population description, and research(?) are included

10. Adopting Common Data Items - Mitigating Factors
Program goals/objectives
Technology capacity
State data structures
State laws/policies
Finances
State politics
More Control
Less Control

11. Lasting Principles
Know your audience-make sure you collect items to answer all your needs-tracking, descriptive, outcome
More is not necessarily better - if you collect it, use it
Collect only what you need – it costs time and money to collect those “rainy day” variables
Disseminating data goes hand-in-hand with collecting data

12. The work of identifying common data items has been a true example of collaboration between states and CDC.
CDC would like to take this opportunity to thank all the members for their dedication.