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

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

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

3. 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

4. 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

5. 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.

6. 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

7. 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

10. 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…

11. 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.

12. 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….

13. 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

14. 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

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

16. 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

22. 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

24. 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

25. 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

26. 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