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: Shihfen Tu:

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