Second-Order Integrated Developmental Database Systems: EHDI Applications Craig A. Mason, Ph.D.Shihfen Tu, Ph.D. University of Maine Centers for Disease.

Second-Order Integrated Developmental Database

Systems: EHDI Applications

Craig A. Mason, Ph.D. Shihfen Tu, Ph.D.University of Maine

Centers for Disease Control and Prevention Second Annual National Early Hearing Detection and Intervention Conference, Atlanta, Georgia,

February, 2003.

Background

University of Maine research team involved in informatics research and development

Collaborations with colleagues in Florida at the University of Miami focusing on Developmental Epidemiology

Contact Information Craig A. Mason: craig.mason@umit.maine.edu Shihfen Tu: shihfen.tu@umit.maine.edu

Overview

Focus on application of strategies for enhancing the potential for public policy and public health research using EHDI data

Address future directions in which we see field heading Strategies we have and are developing for addressing

challenges posed

Second-Order Integrated Developmental Database Data for individuals integrated across multiple sources Data from related individuals is further coordinated, allowing

a higher order of organization Data for same factors obtained across multiple time points

Data Organization

Second-Order Integrated Developmental Database Structure data so that it can be automatically

organized on higher levels, such as family units Recognize the fluid nature of family organizations

Maintain historical or developmental data in readily accessible format

Maintain potential to operate as a functioning administrative database

Example from Child LINK

Complex Blended Family

First-Order Integrated Data Data from multiple sources available and summarized

Basis of flag for hearing reflects referral for left ear

Similar information available regarding birth defects

Second-Order Integrated Data Data from related individuals connected (e.g., family)

All information on related individuals readily accessible through active links

Public health officials able to instantaneously identify and move across multiple members of an extended, blended family

Assist in identifying at-risk individuals

Identify patterns of disorders

Basis for flag under birth defects reflects spina bifida and cleft lip/palate

Second-Order Integrated Developmental Database

Developmental database maintain full history of all individuals

Multiple tests, assessments, events are all maintained and accessible for all individuals across all time ranges

Examine past and future changes in parent education, marital status, home addresses, etc. For example, parents education is obtained from

every birth record, stored electronically, and accessible over time

Jan’s records only indicate that her mother completed 11 years of school

Second-order developmental data shows she went on to complete college

Similar issues when examining broad range of environmental factors

Jan’s records only indicate the family lived in Caribou, Maine

Second-order developmental data shows how family moved over time

Enhances ability to explore environmental factors

Summary

Second-Order Integrated Developmental Database Link an individual’s health data across multiple sources Connects data from relevant, related individuals Maintains all information over time

Benefits Enhanced ability to identifying and track Prevention of “lost cases” Allow longitudinal epidemiological research on family

factors (genetic/environmental) at a population level

Summary

Challenges Can require rapidly increasing number of tables Can require multiple “unique” identifiers for each

individual Can result in exponentially compounded errors Can be difficult to evaluate quality of linkage