Lost to Follow Up Challenges: Data and Systems for Tracking and Surveillance

Acknowledgements Anne Jarrett Sherry Spence Roy Ing National Goals Subcommittees and Chairs All members of the data committee, past and present…

Why Databases and Data Linkage Tracking Up front costs in time and money can be considerable but ultimate efficiencies pay off Can assist in reducing loss-to-follow-up Complete care Connections across areas Answers to questions Where are there insufficient audiologists by what amount

Why Databases and Data Linkage Less likely to miss individuals Probabilistic linking impossible Straightforward follow-up ensures children in prior system appropriately appear in subsequent systems More complicated: Which children in which later system did not appear in which earlier system? Linkage facilitates quality-control evaluations Capture-Recapture would require linkage or electronic format Easier to generate de-identified, yet useful data

Comprehensive Item List A comprehensive list of 450+ possible items Minimum data item--data item recommended for all state data systems; the set of data items that are required for follow-up on universal newborn hearing screening and for full reporting on national EHDI goals. Core data item--data item recommended for complete state-level data system, including basic data needed for program evaluation. Enhanced data item--additional data item useful for clinicians, enhanced tracking, or research.

Recent Activities Focus on items required for National Goals and Objectives Comprehensive Item List as a framework Narrow down to items specifically required to address National Goals and Objectives Include items useful for linkage Include a small set of additional key fields

Data Committee Activities Goals and Objectives Sub-Committees Subcommittees examined each Goal It was felt that some goals were not relevant for tracking and surveillance system “1.5 Financial barriers. Each state will develop a system to reduce/eliminate financial barriers to newborn hearing screening.” Lead to Content of Goals and Objectives Chart

Data Committee Activities Subcommittees examined each Goal Identify potential relevant data items Identify measurement/reliability issues Highlight changes and recommended additions to the wording of the objectives and performance indicators from the original National Goals For example…

Data Committee Activities 3.1.a. Number and percent of infants with hearing loss who received appropriate medical services before 6 months of age from primary care, otolaryngologists, ophthalmologists, and geneticists/genetic counselors.

Data Committee Activities 3.1.a. Number and percent of infants with hearing loss who received appropriate medical services before 6 months of age from each of the following: (1) a primary care provider, (2) an otolaryngologist, (3) an ophthalmologist, and when appropriate, (4) a geneticists/genetic counselors. 3.1.b. …..from ALL of the following….

Data Committee Activities Additional general decisions Identify fields may prove useful for linkage Risk Factors Not address specific risk factors at this time Continue to monitor and expand capability for future Revisit in future with recommendations regarding specific factors and monitoring time frame

Recent Activities Final List of Items 79+ total recommended items 23 address overall goals 28 address specific objectives and performance measures 24 are recommended (as needed) examples of possible linkage fields 4+ are other relevant data items

Data Committee Activities Result in two documents Revised National Goals and Objectives Document Minimum Data Items Document

Revised National Goals and Objectives Document Organize Goals, Objectives, and Performance Indicators Include recommended changes in wording Identify which are recommended as being addressed in tracking and surveillance system Identify necessary data items Include notes and comments regarding recommendations

Minimum Data Items Document Organize Data Items Identify Goals, Objectives, Performance Indicators requiring an item Identify general-level of source for an item Identify data item classification Include notes and comments regarding recommendations

Data Committee Activities Categories Common minimal groupings across programs Allow programs to compare groups or activities in a meaningful way Minimal groupings Hawaii may want to differentiate among various “Native Hawaiian or Other Pacific Islander” groups Vermont may not Some adopted from existing bodies—ethnicity Others need to be created—provider specialty

Data Committee Activities Formulas The numbers programs report mean the same Or at least if they don’t, we know it and can articulate and stipulate the difference EUROCAT (EUROCAT Working Group, 1997) Issues Some will look “better” others “worse” Specify reporting for national EHDI numbers Multiple ways of reporting for different uses

Future Activities Revisit Risk Factors Language/Cognitive/Social Skill Assessment FERPA and long-term outcome data Border-Babies and progressive loss-to- follow-up due to migration Strategies for getting from here to there These are goals to work towards