Tracking and Data Management Technical Assistance Workshop for Universal Newborn Hearing Screening and Intervention Margaret Lubke, Ph.D. National Center for Hearing Assessment and Management Salt Lake City, Utah April 30 and May 1, 2001

Data and Tracking System * Description of data and tracking system Description of how the system relates to: (shares information with) other state databases metabolic screening system CDC’s EHDI reporting system *(Application Guidance: Attachment B: Application Criteria Item 2 (e) page 21)

Evaluation Plan Successes and Failures Screening Diagnostics Inpatient Screening Outpatient Screening Diagnostics Types of Assessment Interventions Amplification Early Intervention services (IDEA-Part C) Other *(Application Guidance Attachment B: Application Criteria Item 6, page 22)

Annual Data Report Number of infants screened (95%) Number of infants referred for audiologic diagnosis Number and age of infants receiving audiologic diagnosis (before 3 months) Number of infants in a medical home Referral to family-to-family support Number and age at which identified infants are enrolled in early intervention services (before 6 months) *(Application Guidance Attachment B: Application Criteria Item 6, page 22)

JCIH Principle #7 (p.11) Use information systems to measure and report the effectiveness of EHDI services. Remove identifying information whenever possible Use aggregate state and national data to measure and track the impact of EHDI programs on public health and education

JCIH Principle #8 (p.11) EHDI programs provide data to: Monitor quality Demonstrate compliance with legislation and regulations Determine fiscal accountability and cost effectiveness Support reimbursement for services Mobilize and maintain community support

Use of Information Management Systems Improve services to infants/families Assess quality of screening, evaluation, and demographics Facilitate collection of data on demographics

“Begin with the End in Mind” Child level reports Summary reports User-defined reports Tickler reports Letters to Parents and Physicians

Child Level Reports Inpatient Results (include percentages) Outpatient Results (include percentages) Diagnostic Results (include numbers, percentages, and age of child at time of diagnosis-3months) Intervention Report (include numbers, percentages, and age of child at time of diagnosis-6months) Hearing Loss Tracking Report

Summary Reports CDC Report Reports by screeners Reports for individual physicians

User Defined Reports Querying the databases The computer system should remember your queries

Letters Parents Physicians Languages Batch printing vs Individual printing capability

Tickler Reports Babies who need outpatient screening Babies who need diagnostic evaluation Risk Indicators Other Recommendations

Data Clusters Baby information Mother information Hospital information Nursery types Physicians Audiologists Screeners Insurance Providers Medicaid Screening Equipment/Protocols Diagnostics ABR, OAE, Tympanometry, Behavioral Audiograms Hearing Status Degree and type of loss Interventions Amplification EI Services School Age services Support Groups Communication Log Form Letters

Data Clusters (continued) Risk Indicators (JCIH) 1994 2000 Results Diagnostic Recommendations Hearing Status Type of Loss Degree of Loss Notes Log Date, Person Entering Note

Other issues to consider Data Definitions Home Births Out of State Births (Residents/non residents) Possible responses for each of the major variables History of actions (changes) Dates when changes are made Merging Information from other sources Archiving Information Transferring Information Duplicate records checking Unique Identifiers Data cleaning (addresses etc)

Three approaches for collecting data Dedicated system Commerical Customized in house Metabolic Screening Electronic Birth Certificates

Data Integration Other state data systems and metabolic screening Ways to share data (use a graphic to describe) One system (Ownership issues) Data Dump (Disks—the old fashion way) Passing information electronically (Security issues) Data Warehouse Real time data integration Robust Design, Coordination, Agreements, Permissions, Security, Rules for who can change what, when; Main a history of changes

Other Health Systems Genetics EDHI Private Providers Neometrics Vital Statistics Birth Defects Metabolic Screening WICK Early Intervention Immunizations Indian Health Services Military

Data Integration Get one link between two databases working at a time Work out all the precedence rules for missing or conflicting data Work out rules for cleaning data Get parents and other partners involved from the beginning KISS